Re: Porphyria, Stratton, etc

[Guest guest]

Jim,

I really appreciate your keeping us informed on the Stratton/Wheldon

protocol status.

I took some of the older Stratton info (from this list) to my doc.

He was interested. I'd like to be sure he has the most up-to-date

treatment protocol info available. What would you suggest I give to

him (I want to email it before I leave on a 3 week trip)? I think

this could advance his understanding of what so many of his patients

are dealing with (not just me).

My doc's recently started testing his patients for lyme and is

seeing 80% of his FM patients coming back positive. So if he's

planning to get seriously into the lyme business, he's going to need

an education fast, and I think this protocol covers so many bases

for so many infections. I think, while we're at it, we should all be

tested for the c.pneumonia as well (another difficult to dx bug).

I'm going to try to get that test when I see him again in August.

Did you test positive for C. pneumonia?

I see Stratton's recent stuff was talking about Celebrex instead of

the older NSAIDS and steroids he was recommending earlier. Now that

Celebrex is in trouble, has he been talking about any other anti-

inflammatories? Has he looked at the ARBs?

penny

p.s. Dang! I picked up the EnteraKlenz inside my gate where it was

delivered a week ago, and it's still in the back seat of my car!!!

Thanks for reminding me!

> Tony-

> I think the first decision is whether one is going to

> test for porphyria (24 hour urine or stool is what

> Stratton refers to) or assume it off of the symptoms.

> I'm going to see if I can get my daughter tested, as

> I'm suspicious that her " neurotoxin " symptoms (as our

> CFS doc refers to them) are actually porphyric. I'm

> going to try to do the same the next time I'm doing

> the Tini pulse and see if porphric levels rise, as I

> think this has been a problem for me for a long time.

>

> What I appreciate about Stratton's handout is there

> are a number of natural ways to address it right off:

> lot's of H2O to dilute the water soluble porphyrins,

> B-vitamins (Colorbleu- you've been the champion for

> these ever since I've been on the list- I may become a

> convert!), anti-oxidants, etc. Of course, all of us

> have tried or are currently using these as a matter of

> course. I'm not at the B-12 levels suggested, but do

> notice it. I've just received the Entreclens

> (charccoal and clay) which is clearly a high quality

> product, reasonable taste, and you can really get a

> significant dose of charcoal easily. One trial made no

> noticable impact, but I think the real test will be

> during my next Tini pulse.

>

> As for drugs vs clearing, I have some

> hydrochloroquinine to try and see if it makes a

> difference in my reactions to the Tini.

>

> Nelly-

> I also read Wheldon and Stratton's unpublished draft

> (last night, as he just sent it to me). While he asked

> not to directly quote it at any length, there's some

> interesting info to glean from it. Maybe you and I can

> summarize some of the salient points for the list. The

> one which I find important to note, as I've started to

> experience this myself, is that there seems to be a

> pattern with the Flagyl pulses and patient reactions.

> First couple of pulses bring clear reactions

> attributed to cell lysis and Cpn cell membrane toxins.

> Arround the tthird orr fourth (there's a more massive

> reaction, and this continues after the Flagyl pulse is

> stopped for days or weeks.

>

> Wheldon, who has seen this clinically quite

> often, attributes this to a significant clearing of

> macrophages and monocytes infected by cryptic Cpn, and

> thus having their cell functions and ATP parasitized,

> suddenly becoming functional again. Thus the after

> reaction is not a " toxic " reaction to the Flagyl, but

> rather ones own immune cells killing Cpn and the

> combined cytokine and bacterial endotoxin load

> continuing as this " layer " off Cpn is recognized by

> our immune cells and killed.

>

> Am I characterizing this right, Nelly?

>

> Jim

> ---------

[Guest guest]

On Saturday, June 25, 2005, at 09:34 AM, Jim Kepner wrote:

> As for drugs vs clearing, I have some

> hydrochloroquinine to try and see if it makes a

> difference in my reactions to the Tini.

Somewhere I read that these shouldn't be taken together but I can't

find the reference now. Did Stratton say it was okay?

- Kate D.