Porphyrias

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Disease cause by incomplete breakdown of heme products in blood.

Toxicity and balance help

 I was wondering if anyone who has large bacteria die off experience severe balance problems and dizzy spells?

 For the last three days I have been feeling like I'm walking on rubber and my leges are very stiff. Walking any distance has me grabbing for something to maintain my balance or the feeling like I need to sit down.  My head feels like a sack of sand, heavy and hard to hold steady.

Has anyone experienced this sensation? And if so, what seems to help?

 I am going to do a detox bath later to try and sweat the toxins out. I am hopeful this might help.

 

Undecided

CAP month 28 Update, Progressed to Intermittent Cycles

CAPi month 28 Update, Progressed to Intermittent Cycles After 20 months on WheldonCAP I went on intermittent.  My MD has chosen not to order trepeat labs for the CPni<i< and co-infectionsi<i< or viruses, of which I had all of these done before the starting any abxi<i< therapy.   

Boyd Haley Interview About Heavy Metals and Porphyrins

I was very interested in this interview and it gave me some new insight into the role of heavy metals and the hemei cycle. http://www.usautism.org/PDF_files_newsletters/boyd_haley_biomarkers2.pdf<

It is worth a read.

Raven

Tinidazole Pulse Progress

Tinidazole Pulses. (Note: Latest entry at the bottom of page)

3.2.09 - 1 - 500 mg tablet

3.16.09 - 1 - 500 mg tablet

The reason I took one 500 mg tablet 14 days after the first tablet is that most of the reactions from it seemed to be gone so I thought, why not? I am in the process of ramping up to a full pulse so I am taking liberty to change things a bit for my benefit. Speed things up when I can as I am such a slow poke.

what is going on...strange fear and anxiety

I have not been able to sleep a full night lately due to a strange kind of fear.

 My thoughts have become my worst enemy and I can't seem to shake it off.  Is this a normal process that everyone must go through? the loneliness you feel because no one seems to understand you are sick.  My friends invite me places but my legs feel so weak that I find myself concerned on how much walking I may have to do. 

My balance is off again and I feel like my body is swaying. So how does one function when you can't do much and can't sleep?

 Thanks for reading my blog.

             BonnieCry

CAP & Adjunct Treatment update March 11, 2009

Treatment Overview on March 11, 2009;

Diagnostic Evaluation May 24, 2007. Chronic Fatigue Sydrome - Progressive onset - 20 to 30 years to overwhelming fatigue, Fibromyalgiai, Mild Form.  C.Pn. positive by Lab test result > 1:512,  Bb positive by Lab test Western Blot after doxycycline taken for 3 -4 weeks for CPni, Borrelia Burgdorferi (Lyme Disease) was revealed as positve on Western Blot late July 2007.

Started CAProtocol 6-21-07 with Doxycycline, N-A-C and all supplementsi<,  CAP Progressed on 10-31-07 Macrolide-added, progressed 11-22-07 Tinidazole-added and also Cholestyramine HS PRN x 7d starting day 3 - 4 of pulse and continuing for +/- 7 days.

porphyria

Hello all,  Thanks to all that responded about the swallowing problems I am having, still working on that. Has anyone  used the natural fat absorbing supplement called chitosan? I am curious because I want to try this because I am having porphyriai symptoms more now since starting CAPi. Thanks and best to allPattiR

Any information on Detoxamin?

I was curious if anyone has heard of or tried Detoxamin?

   My understanding it helps reduce free radicals, heavy metal toxins, and has shown to help with peripherral vascular issues. 

   It is a alternative to chelation IV therapy and comes as a suppository. 

Porphyria / Die-Off / Herx / Exaserbation

I'm back filling.  Seemingly dumb question, but, I don't know.

Do we incorrectly use Herx/Porphyriai/Die-Off interchangeably?  Are they the same thing?  Are they the same thing that non-Cpni'ers are referring too when they take antibioticsi and feel worse?  When we talk about charcoal and Ibuprofen and Glucose, are we talking about the same thing?  Or are these all different things?  I hope to get clarification, because, I wonder if I'm casually confusing 2 or more things as being one thing.  Did my question make sense?  Ken

Sticking my head in the freezer

Well, I took my 2 doxyi and 2 flagyli(500mg each) yesterday, 2 doxy, 1 azith(MWF thing), and 1 flagyl so far today.  Getting ready to take another flagyl before bed.  I FEEL HORRIBLE!  Should I try another day of the flagyl or should I stop for now?  I am burning up and sticking my head in the freezer from time to time while wearing a hot pack on my shoulders most of the day while taking lots of ibuprofen, 12,000 vita c (since I feel like I'm fighting flu or something), etc...etc..  I feel so swollen, my skin feels tight, total brain fog, etc.  I used to stick my head in the freezer years ago when on a lot of antibioticsi and had a lot of yeast.  I was taking Diflucan before the flagyl but stopped it because I'm afraid to take doxy, azith, flagyl and diflucan all at the same time(n

Backsliding...

I am in a quandry.  I am concerned I may be developing a resistance to doxyi and/or azith, is that possible? Or could it just be time for me to mix it up?

 I am again very ill with severe bronchitis and/or cpni pneumoniae symptoms.  I am almost physically at the point I was in March of 2007 when I was first diagnosed (bed ridden, chest pain, deep bronchial coughing, very weak)  This is about the 3rd episode over the last 6 months (2nd within the past 2 months!)

In all honesty my improvements over the past year haven't been significant, other than a reduction in brain fog and a reduction in my FM symptoms.  As each month passes I keep adding to the mix..... I KNOW that is part of this process -- it just becomes more obvious how infected I must be.

Chitosan question

To help battle my daughter's porphyriai, I got a bottle of chitosan capsules.  Each serving is 1,500mg (3 capsules).  Can anyone who has used chitosan give me tips on the best time of day to take the capsules as well as should it be taken away from food, abxi or supplementsi or can it be taken with any of those things?

My daughter has a dose of cholestyramine in the afternoon and  8 charcoal capsules (each 280mg) before bed but I thought it would be good to have another weapon in our arsenal.  Chlorrella did not agree with her -- she tried to take it recently on three different occassions and each time it made her vomit!

Any thoughts you have are appreciated.

 Maria

 

 

Clues and Mysteries and "it's Not Shingles"

Went to a little brunch on New Years day. Went off my usual clean diet and ate whatever I wanted---ham, carnitas,pie and some coffee--but no alcohol.Later that evening, I felt pretty awful. I had this ongoing skin irritation on the back of my head that itched a lot from time to time. I'm guilty of scratching it. It must have got it infected because a bunch of the lymph glands swelled up. One behind my ear was really sore.

Glucose for Porphyria

Could someone please explain why Glucose is useful for treating the symptoms of secondary porphyriai?

Anne

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