Porphyrias

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Disease cause by incomplete breakdown of heme products in blood.

Cholestyramine (koe leh STYE rah meen) - Questran- Questran Light

Cholestyramine Light

Generic Name: cholestyramine (koe leh STYE rah meen)
Brand Names: Cholestyramine Light, Locholest, Locholest Light, Prevalite, Questran, Questran Light

Source: http://www.drugs.com/mtm/cholestyramine-light.html<

 What is Cholestyramine Light (cholestyramine)?

Cholestyramine is a drug that lowers cholesteroli (a type of fat).

Cholestyramine is used to lower high levels of cholesterol in the blood. Cholestyramine is especially good at lowering levels of low-density lipoprotein (LDL) ("bad" cholesterol). A rise in triglycerides (another type of fat) may occur.

tagamet question

Since I tested positive for porphyrins. I decided to take measures to control them more. I started Tagamet 200mg at bed. I had signifigant clear die off. I did a search on Tagamet and found it boosts natural killer cells and the immunei system. I found articles on it curing cancer, helping aids and herpes just to name a few. Has anyone else experienced similar?

Darn Coldsore......

a miniscule marker in my treatment, but I have NEVER in my life had a coldsore..... and I now have one that appeared this morning out of nowhere.  Guess the antibiotic's are finding the infectionsi in my body!  Last week,  I was getting small, inflammed red bumps (looked like a pimple coming on)  randomly around my mouth... just a few.

Past two weeks have been EXTREMELY difficult -- my fatigue and weakness have me down almost all day.... I am having "wiggy" porphyric episodes again (waves of anxiety... chest pain, coughing), which seem to dissipate with sublingual b12 and Vit C (as long as I stay in bed and don't move around).  My lymph nodes in my left arm, shoulder and neck are swollen and very tender....

Rant.....

Rant… 

I’m getting a bit discouraged. My fatigue is worse – I am sleeping 11-16 hours per day.  If I force myself to awaken with an alarm, I am pretty much toast the rest of the day (even with naps).

6 Month Milemarker on CAP

Actually, 6 months and 2 days... the 27th of September marked six months of my being on CAPi.  As Ruth mentioned in a previous post about herself, I am no longer a newbie!  I am now reading posts of those coming on board, reflecting on my past experiences!  It's a strange feeling indeed -- firstly, to realize how many of us there are "out there".  It is wonderful that people are finding this website -- the word is getting out.

As I read of those coming on board it's a curiosity to gauge the different levels of tolerance the individuals have.  Some are able to ramp up on the meds quite quickly and others, like me, struggle to build up to each level.  I guess this is also indicative of our unique immunei systems and the CPNi load each of us carries.

My sustained flagylation leads to porfyric vicious circle

Maximouse, with her pink ear tag indicative of sustained flagyl, has had to switch places with Minimouse wearing a blue one indicative of fall back to less flagylation.

I'm feeling a bit sheepish (or maybe mouseish) after high hopes of improving the rate of die off and speed the recovery a bit along the way, but after taking 400mg of metronidazolei daily for 6 weeks (with a 5 day pulse of 1200mg in the middle) I have had to give my poor liver a break for the past week.

Help I am so confused

I am still trying to get a grasp on Chlamydia Pneumoniae, I just found out on 4-11-07.  But I have been sick for awhile  Cry.  I am just starting Antibioticsi again......eeeeek Foot in mouth.  My symptoms have been sinus infectionsi and uppper respitory infections , Phlaringitis, Broncotitis, Asthmai.  In and out of the Dr. office the month of April, and my throat swelled shut I could go on and on.  I ended up at an Infetious disease Dr.

cholestyramine question

I go for my monthly visit friday to my gp. My question is what dose to control porphyriai. Do I need to take it everyday or can I take only during and after pulses when needed. thanks sjogren's minocin 200 daily, zithromax mwf, flaygl monthly , all supplementsi

Five Ways of Feeling Lousy

 Dr. David Wheldoni's succinct summary of the different reactions to Cpni and its treatment helps in sorting out the different responses and what to do about them. I've moved this from his comment in another members blog post to a page of it's own here in the Cpn Treatment Handbook.

Jim K (Editor in Chief) 

Five Ways of Feeling Lousy

I am inclined to think that there are five major mechanisms behind those unpleasant side effects of chronic large-load infection with C pneumoniae which worsen in the short-term with antichlamydial treatment.

a) Lipid peroxidation may likely get worse in the short-term as bacterial products are released both by breaking down EBs and by apoptosisi< of infected cells. Antioxidantsi<i< and B vitaminsi< (including B12) may help with this. I find melatonin">i<i< at night helpful.

I guess I'm not having a heart attack...

Holy crap.

So.  There I am Saturday night.  I'm feeling a bit light headed and my chest is feeling tight.  Honestly, it's not so far off how I normally feel.  I've had the chest thing for a few weeks now.  The light-headed thing was worse than I'm used to, though.

 In the middle of the night I wake up covered in sweat (not so abnormal), with cold extremities (not surprising), my breathing is tight (yep), but the new one was:  my extremities were going numb intermittently.  That was a new one.

So, after debating about it for a while, I decided to do the whole ER thing. "Howdy, I'm having chest pains.  Wow, you can see me right away?  Great."  Well, some interesting test results came back:

Normal EKG.

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

This is something I have been meaning to get clarified: how important are ferrolactins as promoters of porphyriai?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 

MSM, sulfur, porphyria.....

Hello Everyone,

I was just reading the list of foods to be avoided when on treatment re: porphyriai including sulfur containing foods.  I take MSM (methylsulfonyl methane) as a supplement to control my Fibro pain.  Without it, I am a wreck. 

Would it be ok to continue the MSM while on treatment or should I try to (ouch!) stop it.....

Pink:)

How much glucose?

How much glucose should I be taking in coke in a day. Will it promote yeast?

porphyrias

Why do some people get this and others don't. I seem to be having a big problem with this.

Porphyria......?

I've read several posts on Porphyriai, including the interview with Dr. Stratton (I think is who it was).  I'm still left wondering what I can do to combat porphyria as I definitely have it going on and it's something I want to deal with.

As far as I know, the only thing that can be done is the following...

  • take activated charcoal in either powder or capsule form
  • wash it away with water
  • avoid eating protein / eat a diet consisting of 70% carbohydrate

Have I left out something?  I'm left wondering if there is anything that can be done medically?  Would a medical measure to address it also lead to other undesireable side affects?

take care

John

p.s.  signature not omitted intentionally

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