Porphyrias

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Disease cause by incomplete breakdown of heme products in blood.

questran question

I had a dr. appt. yesterday and she put me on questran. How does everyone else take it as far as scheduling it with meds. I have not picked up the script yet, but I would like to know what dose everyone else is on.

Positive for BB?

When I saw my dr a few days ago we went over my labs results that had come back. The Western Blot for Lyme disease. IgGi was negative. Good news, right? But strangely enough, IgM was positive by both standards - unconventional Igenex (where the labs were actually done) and CDC.

I was floored, I really didn't believe that I may have Lyme.  The dr told there may be a false positive and we ordered a confirmation test with Igenex.

The reason I think it is strange to have IgM (+) b/c my sxi started so long ago and logically it's IgG that should be (+) if I have Lyme.

What to take for depression associated with CFS?

I need any information anybody can give me on overcoming depression associated with CFSi. I am currently taking 40 mg/ day Nortriptyline, 300 mg/day Wellbutrin, 75 mg/day DHEAi. I'm on a lot of anti-oxidants too.

Still experiencing moderate to severe depression. Most days, severe depression. What will help? Anything? Does Vitmain D help? I have to hold down my full time job and the depression (along with the fatigue) is REALLY taxing me and my motivation and could cost me my job if I can't find something to help.

Any thoughts or suggestions would be greatly appreciated.

Thanks, Lynn

 Cpni, Mpn, CFS, CAPi - Doxy, Erythromycin, NACi<

Porphyria, glucose, insulin and PGC-1 alpha

More hemei pathway questions....

This may have been posted already, but:

Most mild CAP protocol in terms of side effects & die-off?

I started CAPi with Minocycline 100mg x 3 + Rifampin 300/day only to stop it due to huge reaction. My dr was thinking in the lines that's one of the abxi causing side effects, perhaps the Mino. Soon I re-started only with Doxycycline 100 mg x 2/day. At first it was OK but I had abdominal pain, aggravated hypertension">i, hypoglycemia and porphyriasi again and by 10th day it was too severe for me to continue. I mean, I felt like it was life-threatening at the time.

I stopped Doxy a week ago yet still haven't recovered completely. Today I feel that like I was hit very hard on a head but a bit better in general.

porphyria ... when does it happen?

all the time?

Hypoglycemia and how do you manage?

I am on Doxycycline 100 mg x2/day since 01/14/08. Before Doxy I started with Minocycline/Rifampin CAPi but had to stop in a few days due to severe reactions and overwhelming hypoglycemia as well. Now, on Doxy, hypoglycemia continues. I was feeling good for a couple of days earlier this week but on Wed evening relapsed with weakness, tiredness, shaking/shivering due to feeling cold, tachycardia, BP's up, nausea, hunger and so on. Most of the Thu I felt waves of the same effects and had to leave work. Today, Fri, I am feeling much better but I have to eat something every 2 hrs to keep re-occurrence of hypoglycemia away.

Porphyria problems....

 : (    My beautiful post on xylitol and insulin got called a spam!!  Well I never---!!!  does that happen often?  Oh well.  Maybe it will "pass" later.... 

Anyway, I have truly awe-ful porphyriai going on, I see that now.

So I've given up--- get ready for it!---

-bananas, raisins, maple syrup, honey, all fructose, sucrose, etc.

-anything purple, like blueberries or red grapes

-anything cruciferous, broccoli, cabbage

-any red/dark meat, and fish 

(and these hideous sacrifices are helping with some symptoms, like the headaches and abdominal pain --- but not the cold feet or diarrhea.)

Any treatment I try is kicking my butt, I need help!!

Hi  from Wini,

You guys rock!  I've been reading stuff on this site, and giving it to my ND for several months.  Right now, I am freakin' desperate... and  I bet if I glop some of my sad saga in here, y'all will have helpful info for me.

I've been fall-down sick intermittently since my teens; I'll be 49 in 4 days, whoohoo!  Youthful diagnoses were, gosh, there sure is something wrong with ya, but dunno what, take Prozac/tetracycline/gamma globulin/more prozac.  You know the drill, I'm sure...

CFSi/Fibro/MCS wasn't really helpful because, heck, whadda you do?

Blood ozone, all OG diet, meditation, yoga, lots of water, enough supplementsi to cure the Brit. navy of scurvy --- it all helps, but.....

Secondary Porphyria

This is a page "in process" for the new Handbook. For now, I'll use it to post some charts from a book chapter. and some random notes on porphyriai that I'm gathering for a more organized presentation.

Porphyria Symptoms: excerpt from this link.<

  HerePorphyria Signs & Symptoms: Chart from book excerpt: Here

 Neurovisceral Features of Acute Porphyria Attacks

FMS symptoms, besides pain meds??

Good afternoon!

I've been having fibromyalgiai symptoms for the past 4 days- neck, left shoulder, back of head, band across my head from 1 temple to the other, down my spinal cord. I haven't dealt with fibro symptoms in several years and I can't remember what I can do to relieve my pain and stiffness.

I've been taking Lortab (Hydrocodone with acetaminophen) and/or Ultracet, aspirin, using a topical analgesic oil rub and a moist heat wrap. I'm also stretching. I've considered the chiropractor and massage therapist just haven't made appointments yet.

Dear Diary, day 3, pulse 4

....The Troll Queen has risen once again!  argghhhh  I was on the phone with my spouse & snapped at him, yoi vay!  It came right out of left field.

I have been walking on egg shells as I have progressed from 9 days ago, 80% of my body in a"rash" to the remaining rough scaley skin surfaces here & there.  My face is healing up nicely.  I have gone through lots of calamine, baking soda, epsom salts & an awesome aftersun cream that has alot of aloe & vitamin E.

Restless Legs??? Need answers quick please!

Restless legs?? Need answers quick please! I was out last night with my friend when all of a sudden I felt like I was going to have a seizure.  I have felt this way on and off since starting the protocol so I know it's part of the cpni (besides having a hx of these sizures which i now know is Cpn related seizures). Had not had feelings of a seizure in a couple of years before CAPi protocol. Anyway, after that I realized that I felt I could not stand up. My legs were so weak and I started having the sensation that ants were crawing inside legs. Haven't had restless leg syndrome since last winter with EBVi. And it got really bad last night.

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