Dec 24, 2008 marks the completion of my 18th month of treatment.  I am antibody positive for CPni and Bb.  I started treatment on bacteriocidal level of Doxycycline 400 mg/day for almost 4 months before cutting back to 100 mg BID and adding Roxithromycin 150mg BID daily.  Those first 4 months were incapacitating and perhaps advantagious it is water under the bridge and I would not recommend it to others. 

Unexpectedly, in my 55th pulse, I got - as Jim K colorfully calls it - slammed.

Last Monday I returned home from an exciting week of over 6000 miles air travel and a wonderful visit in Palm Springs to see my daughter open her beautiful new veterinary clinic. I met some of her clients and patients and told many of them of our own ground-breaking site with its adventures. There is NO litter in Palm Springs. My home-coming was very different from those in the past in that I did not need "recovery days" after landing and then driving 170 miles home after a 15 hour all-day two flight day from coast to coast. Amazing.  Not only is there "one is never so blind as one who will not see", but there is never one as grateful as one who has been to hell and back.

Paula has had some bad days this past week.  There were times she thought she was dieing.

Those dieing like symptoms were:-

A) Rapid heart beat that wouldn't slow and she would wonder if her heart would take it.

B) Her fatigue would get so bad that she would have trouble catching her breath.

These symptoms would last between 30mins and an hour.  It was during this time that she would also get the classic porpyhria symptoms including paranoia issues.  This led me to believe that the 2 major issues above could also be porphyriai related.

Hi to all!

I was just wondering because in the supplement chart Naci is listed with the dosage 2x600 p.d. But in the caps compared chart is written 600-2400 mg p.d.

Can anyone tell me which dosage is enough , I mean if 2 x600 is enough - why should one take 4x600?

Best regards

First of all ... I do not know why I ever complained about not sweating! I had daily & nightly fevers in Sept. Sweating was the way of my existence and drinking water was all I could think about as my thirst was so great. This past month the fevers are letting up. I only sweat a few hours a day usually after dinner or during the night. Occaisonally now I skip a day or maybe two or three at the most. Just when I think the fevers and sweats are going I get hit again. So this has caused me to stay home indoors a lot the past couple months cause my nap time is definitely therapeutic. By afternoon I am drained. However, I jump at the chance and have managed to drive two or three days during the good hours of my better days. Otherwise I think I would go stir crazy.

Since the early seventies, I have been able to make my body go numb. The first times I fell because I didn't know what was coming. I have been able to do this at will for many years, but took care not to fall down. Fortunately, the feeling always returned.

As stubbornness is the nature of us on this site, I have only listened to Richard in the last six or so months when he admonished me not to do that! I can also dislocate my hip but he says not to do that either! (Takes all the fun out of life - no?) (No)

So - what IS the point - simply put: the ability is gone. I cannot do it anymore AT ALL. Not even a tingle and certainly no numbness. Yes, the quiet improvements continue - and the energy is very, very nearly back to my norm or 55 years. Keep at it - it pays.

The most useful posts on NACi? Bluebird pointed out to me that it's useless to try and do a site search on NAC as it's mentioned on almost every page, if only in signatures. So I thought some of us might have bookmarked posts that are more informational or explanatory on the subject. Please post your links here. Thanks.

I recently had a blood test done for Cpni panel to see what I could learn. I realize these tests are not considered accurate. But I was curious & had the opportunity ... so why not?

The panel included C. trachomatis, C. pneumoniae & C. psittaci.

Both the C. trachomatis and C. psittaci results came back normal reference range and said "ANTIBODY NOT DETECTED".

However the C. pneumoniae came back marked high on two fronts.

IgG  1:512 H   (reference range: 1:64)

IgA   1:64  H    (reference range: 1:16)

IgM <1:10

Interpretation = PAST INFECTION

I've written about my sister before.  She asked to be tested for CPni at Cleveland clinic and came back positive, something like 1/125 or close to that.  Cleveland Clinic asked her if she wanted to be treated with 1 abxi for a few weeks. 

She has lung and sinus problemsi, fibromyalgiai, fatigue and serious heart and vein problems and inflammationi.  Basically the falling apart syndrome.  I tried to get her started on CAPi, but she didn't follow through, claiming she didn't have time to get sick.  She did take NACi for awhile.  Now she is really sick, with pretty bad heart problems.  She has been diagnosed with everything under the sun over the years, but then they always end up changing their minds and saying it probably isn't what they thought it was.

It has been some time since I have updated my blog so here goes.  What to say???, breath, wind me up &&& …. I have been disengaged on the site as I just haven’t had the mindset to handle the stress.  I apologize for this as I know that my support has made a difference to some.  I found myself reading the posts and was getting stressed out & frustrated with it all.

Just a quick update.  Just got off the phone of Dr AW's clinic.

It appears that in the blood sample that Paula produced a couple of weeks ago, using his dark filter microscope, he found BORRELIA!

Paula was bitten by about half a dozen ticks in the summer of 2004!

When she first became bedridden, she was tested by the NHS for Lyme but nothing was found.  I wonder if the little blighters have been forced out of their slumber like a massive kick up the arse, by the Doxyi and Roxyi! - I bet if we did the NHS Lyme test again, it would be positive - I wonder if it is worth asking?

Prior to any abxi or Samento, Dr AW using his blood test, only found CPni in Paula.

A couple of weeks ago, she suffered from a couple of crashes, whilst on her daily trip to the bathroom.  Luckily her daughter was in the house both times, to help her back to bed.  At that point we decided to get a commode put in the bedroom.

Over the course of the 2 weeks, she was able to use her usual jars by the bed for the "No.1" and the commode for her daily "No.2".

About a week ago, she started taking a 3rd dose of powdered activated charcoal (2 teaspoons at a time).  I have ordered some Colestyramine to try at a later date, when it is delivered.  We are doing this to try to bring down her porphyrin levels as much as we can.  Her porphyriai symptoms included:-

Terrible fatigue

Presently I have been on Minocycline for over two weeks. The inflammation has been increasing in small increments daily. I was not keeping on top of the load of toxins/porphyria with my usual doses of glucose, Emergen-C and charcoal. So a couple of days ago (9/20) my recent supplement order was delivered which included some Yaeyama Chlorella to try out. Only after two days of use before lunch I am impressed of how effect it seems for me. It is the perfect pre-lunch mopper. Which is a time of day I really need help. It is when it is not convenient to take any of the other moppers I use. But to be clear, I definitely will continue all of them at the usual times I take them as well.

This is a short blog of hope for those of us who are having a hard time seeing far ahead.

Last Sunday night I finished my 53rd pulse of flagyli. After more than three and a half years, I was back on Rifampin. Vertigo had hit me fairly hard as soon as I took my first capsule so I was curious how this pulse would affect me. Last fall and this spring I did extended pulses and was not mightily affected, which was encouraging in itself.