Secondary Porphyria So Soon On Protocol!!

Paula has been on Roxyi [1] for 2 or 3 weeks now. These last few days have been as Ruthless1 would call Troll Queen days. I realise for the people who are suffering from secondary porphyriai [2] that it is a horrible thing to go through. It is nearly as bad for the carers sometimes.

Until the night before last, Paula was only on 12 caps of charcoal once per day. We have recently increased it to 12 caps twice per day, and last night Paula plucked up the courage to take some D-Ribose and she didn't have any bad reactions from it. She plans to take the recommended D-ribose dose and we hope that as well as giving her some extra energy, it may help the porphyria symptoms to abate a bit saying as she can't take Glucose because of glyceimic reactions.

I didn't realise that her porphyria would get this bad saying as she is on the bacteriostatics and not the bacteriocidals yet.

Her energy levels are pretty bad at the minute which could relate to the porphyria. Her NACi [3] flu type reactions abated a bit for a few days, then came back with a vengeance this morning:-

clear mucal discharge down her throat which she coughed into about 6 toilet rolls over the course of 8 hours!

I keep telling her that these are all good signs - the little ba***rds are kicking up a stink as they are dieing.

Fingers crossed that the d-ribose does some good. Her porphyria did abate after taking it plus the extra charcoal last night.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04. CPNi [4]i [4] dx.Apr07. Borrelia dx Sept08. ~~Samento 15 drps daily July07. 200mg Doxyi [5]i [5] Jan08. 300mg Roxy Apr08~~ Stopped abxi [6]i [6] Nov/Dec08. Building up on Supps again.

:-( UK Carer of bedridden [7]

Submitted by Mark Hall on Sat, 2008-05-03 12:45.

:-(

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [5] Jan08. 300mg Roxyi [1] Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04. CPNi [4] dx.Apr07. Borrelia dx Sept08. ~~Samento 15 drps daily July07. 200mg Doxyi [5] Jan08. 300mg Roxy Apr08~~ Stopped abxi [6] Nov/Dec08. Building up on Supps again.

Hi Mark, I'd like to add [8]

Submitted by Reenie on Sat, 2008-05-03 13:30.

Hi Mark,

I'd like to add that although I haven't even started any of the abxi [6] yet and I've already been noticing porphyrian symptoms from just increasing my Vit D and iodine. (possible increase in antimicrobial functions)

I've been using porphyrian methods to treat the symptoms and what I've found is that I feel better from them, especially taking chlorella and charcoal at night. I've been eating some glucose before my meals too, which seems to make a difference as well along with an increase in my complex carbs, mainly basmati brown rice. (I have to be careful due to hypoglycemia)

IMOi [9], using the porphyrian measures this early on helps me to understand how I can improve my symptoms and will be more prepared later on. And of course, it confirms that...

the little ba***rds are kicking up a stink... as you say.

MP for 3 1/2 yrs. NACi [3] 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [12], Secondary Addison's

When I change what I believe I change what I do

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NACi [3] 2.4g, Zithi [13] 250mg/MWF, minoi [14] 200mg, Tinii [15] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [12], Sec Addisons

Don't believe everything you think!

Hi Reenie, Glad to hear the [16]

Submitted by Red on Sat, 2008-05-03 13:57.

Hi Reenie,

Glad to hear the anti-secondary porphyriai [17] measures are working for you!

Hi Mark,

Yep, I believe strongly that many of the symptoms we have even prior to CAPi [18] are related to secondary porphyria. And they can only increase when we are killing Cpni [4] with CAP and other agents. Making sure to start anti-secondary porphyria measures even before starting CAP only makes sense.

Charcoal and chlorella seem to help with the secondary porphyria for most. Also be sure to Paula drinks plenty of water regularly throughout the day, make sure she eats often, and if possible with her glyceimic reactions, make sure she eats plenty of starchy carbs throughout the day as well. One good gauge I found is to make sure that my urine always runs as clear as possible. If I don't get enough water or eat something that sets of the secondary porphyria it starts to get darker, and if I don't take counter measures immediately, I pay for it later.

Hang in there. Give our best to Paula...

On Combined Antibiotic Protocol for Cpn in Rosaceai [19] 01/06 - 07/07, On Vit D3 + NACi [3] since 07/07 and daily FIRi [20] Sauna since 08/07

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Treatment for Rosaceai [19]

CAPi [18]: 01/06 - 07/07
High-Dose Vit D3, NACi [3] & FIRi [20] Sauna Only: 07/07 - 11/08
Intermittent CAP, High-Dose Vit D3: 11/08 - Present

Mark, The worst part is the

Submitted by MacKintosh on Sat, 2008-05-03 13:58.

Mark, The worst part is the owner of the porphyriai [2] has no control over their mood or what's coming out of their mouth, so they feel awful (emotionally) while they're feeling awful (physically). Hide all the small, throwable objects (kidding, just kidding here, folks) and pick up a supply of anti-porphyria measures. Now is time for pampering, too. Marie Rhodes (where is she these days?) and Raven always laid in a supply of 'be nice to myself' stuff for when things got crummy. Me, I just slept through it, I think. ;-)

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

The phleglm can be vile -

Submitted by blackfoot on Sat, 2008-05-03 14:23.

The phleglm can be vile - the 'buckets and buckets' element I know only too well. Sympathies.

Mine did subside after a couple of months starting Doxyi [5] then Roxyi [1]. Now it just usually pops up when I get a flagyli [21] reaction.

M.E./CFSi [22] 20 years, intermittent. Wheldon Protocol - Started NACi [3] and supplementsi [23] Sept 2007. Doxy and Roxy full dose by Dec '07. First Flagyl pulse January 2008.

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M.E./CFSi [22] 20 years, intermittent. Wheldon Protocol - Started NACi [3] and supplementsi [23] Sept 2007. Doxyi [5] and Roxy full dose by Dec '07. First Flagyli [21] pulse January 2008.

Mark, sorry you are getting

Submitted by ruthless1 on Sat, 2008-05-03 14:35.

Mark, sorry you are getting the brunt of the Paula Troll Queen jabs. Try not to take it personally. They are definitely a sign from the slaying of these unwelcome guests CPni [4].

when that happened to me I upped the anty & took more moppers so I could keep step with the toxins. Every once in a while the toxic talk of the Troll Queen appears or a bit of anger pops up even so. Then I just add more moppers.

Hugs to Paula as it is pretty darn wierd when the verbal garbage is coming out of your mouth & you are wondering who the heck is saying it! Sounds like my voice, yikes!!!

You are in my prayers!

CFIDSi [10]/ME 26yrs, FMSi [11], ~~IBSi [12]~~, EBVi [24], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 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 [10]/ME 32 yrs, FMSi [11], ~~IBSi [12]~~, EBVi [24], CMV, Cpni [4], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [23] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [21]/day-3 days

Thanks everyone! One query

Submitted by Mark Hall on Sat, 2008-05-03 17:37.

Thanks everyone! One query though - Paula has taken Chlorella for the first time tonight. I realise you should take it at least 2 hours away from the Charcoal, but is it ok to take at any time including with the vitaminsi [25] and minerals - would it not take some of the minerals out of your stomach? I'm a bit confused.

Cheers,

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [5] Jan08. 300mg Roxyi [1] Apr08.

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Mark, It's my understanding [26]

Submitted by Reenie on Sat, 2008-05-03 18:58.

Mark,

It's my understanding that chlorella can be taken anytime. It works differently than the charcoal but some folks do feel some relief from it.

The charcoal absorbs everything and so needs to be taken away from meds and supplementsi [23] on an empty stomach.

MP for 3 1/2 yrs. NACi [3] 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [12], Secondary Addison's

When I change what I believe I change what I do

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NACi [3] 2.4g, Zithi [13] 250mg/MWF, minoi [14] 200mg, Tinii [15] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [12], Sec Addisons

Don't believe everything you think!

Mark, what Reena said is

Submitted by ruthless1 on Sat, 2008-05-03 22:19.

Mark, what Reena said is what I think as well about the Chlorella.

CFIDSi [10]/ME 26yrs, FMSi [11], ~~IBSi [12]~~, EBVi [24], CMV, Cpni [4], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 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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Hi Blackfoot. The clear

Submitted by Mark Hall on Sun, 2008-05-04 05:25.

Hi Blackfoot. The clear phleglm that keeps trickling down the back of her throat and has to hack up is one of the worst symptoms that Paula has. She has had it to varying degrees since July 07 when she started on the full dose of Samento. Her doc thinks as it has good general antibacterial properties, Samento may kill some EBs.

As her fatigue is so bad and may be the worst I know of anyone with CFSi [22] on this site, this probably means that her bacterial loadi [27] is massive. She continues to take the 12 drops of Samento per day as she thinks it may be doing her some good.

We both hope that this mucal discharge abates - mainly for Paula's suffering, but also for the cost of buying toilet rolls! :-)

When it is very bad, we go through nearly 50 toilet rolls per week!

I would say that her "hockling" as she calls it is pretty bad for about half the week. It seems to come and go. She may have a very bad 2 or 3 days of it, then it subsides by about 50-75% for a couple of days, then comes back again!

Fingers crossed that it subsides eventually. There was a time when she didn't hockle for a week a while back, so we got lulled into a false sense of security - then Wham! - back again.

Oh well - at least this hockling means something is being killed off - which I keep telling Paula.

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [5] Jan08. 300mg Roxyi [1] Apr08.

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Reenie, I think you make a

Submitted by Mark Hall on Sun, 2008-05-04 11:47.

Reenie, I think you make a good point there. I think Paula's porphyriai [2] has been slowly building for a while and I agree that it is a good idea to start the anti-porphyria measures before starting the CAPi [18]. It's strange that most of her CFSi [22] symptoms that she has had these past few years are a mirror image of secondary porphyriai [17] symptoms. Like a jigsaw puzzle coming together.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [5] Jan08. 300mg Roxyi [1] Apr08.

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This is porphyria in a

Submitted by Mark Hall on Sun, 2008-05-04 11:55.

This is porphyriai [2] in a nutshell from our experience. Thanks to Ruthless1 for the quote.

"it is pretty darn wierd when the verbal garbage is coming out of your mouth & you are wondering who the heck is saying it! Sounds like my voice, yikes!!!"

Paula has said herself that she can hear what she is saying and can see the offence it gives, but has no control over what she says at the time. I suppose it's a bit like Tourette's Syndrome - but not quite.

:-)

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [5] Jan08. 300mg Roxyi [1] Apr08.

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I take my Chlorella last

Submitted by Andesine on Sun, 2008-05-04 14:16.

I take my Chlorella last thing at night. It does make a big difference. I ran out and had to do without for 2 days and started to develop cystitis symptoms, terrible sweats and hot flushes. As soon as I took some again it all calmed down.

Berkshire, UK. Diagnosed RRMSi [28] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [23]. Doxyi [5] 200mg.
No GP/Neuroi [29] support. Self medicating with help from David Wheldoni [30].
Started CAPi [18] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [28] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [5] 200mg. Zithi [13] 250mg. Metroi [21] 400mg.
No GP/Neuroi [29] support. Self medicating with help from David Wheldoni [30].
Started CAPi [18] 20th April 2008. First pulse June 2008

hmmm Chlorella junkies,

Submitted by ruthless1 on Sun, 2008-05-04 18:19.

hmmm Chlorella junkies, lol

Mark & Paula, Jeanneroz is also home bound with the ME at this time, she shared her turettes like experience & I mine (bad day with the mother in law) & hence the Queen Troll & she is the Princess Troll names came to life last fall!

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weird you mention

Submitted by blackfoot on Mon, 2008-05-05 15:01.

weird you mention tourettes. I had an 'attack' of it at Waterloo Station in London last week - at some point between me feeling 'good' on flagyli [21] post and the downturn that follows. As you describe Paula, so too me. The railway people had failed to publicise a train and were shifty and obstructive about my enquiry/complaint. So OUT came the claws and Msi [31]. Tourette made a very quick but unforgettable appearance. As you say, I knew it was offensive, but I just couldn't stop myself ....!

M.E./CFSi [22] 20 years, intermittent. Wheldon Protocol - Started NACi [3] and supplementsi [23] Sept 2007. Doxyi [5] and Roxy full dose by Dec '07. First Flagyl pulse January 2008.