Hi Bio - If you haven't found it - this link -----

http://www.cpnhelp.org/cpn_and_cap_overview 

should help answer some

of your questions.

 

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

NACi cleans Mercury : "NAC is a chelator of heavy metals. In other words, NAC binds to toxic heavy metals such as mercury and lead, and removes them from the body".

http://www.healingdaily.com/index.htm

So, I guess you're right!  read a lot and then educate the Doctor.. so funny and so real!!!!!

Some of us are surviving without the Doctor, because some others are barely making it with a Doctor... lol... it's a weird but amazing group of people helping one another.  

Hope you find a good helpful physician!

Get well, God bless!

Maria 

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God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

My luck with major infectious disease doctors was pitiful. Try the NACi test and let us know how it goes.

GREAT screen name, by the way!

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Again Biohazard, Nice to see your blog.  Some folks her have been tested some, as with the Lyme bacteria test false negative so we talk a lot here about emperical treatment.

Keep reading, you could start with the Getting Started Tab.   And of course it is a really expansive site once you get into it.   The forums are wonderful yet there is also research data as you seem to be quickly becoming aware of.

Welcome again.   Louise

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Interesting. My RBC and Hct have been below normal or right at the border of low. Hgb has been mid-range. I tested postive for Cpni antibodies but negative for Lyme and mercury. Not sure what the heck that means but I thought I'd throw it out there anyway. :P

My Eos have been high my entire life I think as I've had nasal "allergies" since I was a small child. Eos - that's the eosinophilia test, right?

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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

Sunnivara...

 

Eos is Eosinophil, not sure what it means. If it means nasal allergies then that works for me. One side of my nose or the other is always stuffy and has been that way for years. Is that the case with you?

 

As far as I know there is really no conclusive test for Mercury unless you did a DPMS challenge. And the Lyme tests are hit or miss. The Elisa is supposed to miss 35% of Lyme cases. The Western Blot is better and there are two labs IGenex and Bowen that are the ones the Lyme people say to use.

 

Getting proper diagnosis is difficult for either of those. so I wouldn't rule out either. Thyroid issues can be due to mercury (that's the common understanding). If you need a good thyroid site see http://stopthethyroidmadness.com

 

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

MacKintosh

I'm a little nervous about such a test. I suspect Mercury poisoning is partly to blame for my problem. This is my second time with CFSi. The first was in 1995 after about a year of dental work after a five year layoff. And a month after a filling broke. The second time (this time), snice late 2003, was after about 2 years of dental work with several unsafe amalgam removals and an extremely stressful period of about 6 months.

 Anyway NACi is excess there is a worry that it will product cysteine which is known, by some, to carry mercury to/from the brain.

 See this post from Andy Cutler for more information about NAC and mercury: http://onibasu.com/archives/am/1997.html

>GREAT screen name, by the way!

Thanks, I was actually searching for the biohazard image to play a joke on a guy who has been out sick and it occured to me that I fit the description perfectly.

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

Yes , your name is great I like it too. 

I had all my amalgams removed about 15+ yrs ago. I swear i also read once that mercury when it becomes methylmercury causes antibiotic resistant bacteria. I think it was somewhere in the info from the hal huggins stuff... is that his name? However, it was way back many years ago when i read it so i dont even know where to begin to look it up again. I would think that yes they would be synergistic because the same elements that would fight off cpni would also reduce mercury thus if the body was taken up with one then it wouldnt be as able to respond to the other? Just my guess

 

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.

Huggins I think got it backwards. He seemed to think that Candida yeast protected one from mercury methlyating. Everywhere else I read that Candida will methlyate mercury. Candida will make the mercury symptoms much worse. There are other bacteria capable of such feats if you google for it. Mercury itself is an antibiotic from years past, not to mention it inteferes with a ton of enzymatic reactions. I would be curious to know if there is a mercury tie in with people with CPNi?

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

bio- I'd avoid the infectious disease doc's who, as a group, have responded even worse to any notion of bacteria causing diseasesi like MSi and CFSi than neurologists have. And that's saying something. You are better off looking for a Lyme literate physician who is starting to treat Cpni also, or a CFS doc who uses antibioticsi, as they are more likely to be educable in this arena.

Your signature sounds like me about 5 years ago: searching constantly, supplement after supplement, getting worse and worse over time. I was lucky that I actually tested positive for Cpn in a blood test, otherwise it never would have occured to me that I had an infectious source to all this. Frankly, I've seen people do all the heavy metal stuff, all sorts of IV's, detoxig programs out the wazoo, with very little to show for it in the long run. At this point you have some practical things you can try to see if you get any suggestive reactions. The NACi is the easiest thing to go after first. If you get a significant reaction you can be pretty sure it's Cpn. If not, you still have other things to test it out, such as an empirical trial of antibiotic, serologyi tests, and so on.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim,

Thanks for the comment. I have an appointment in 3 weeks with a thyroid specialist who follows Broda Barnes (alternative) treatment/diagnosis. Maybe he can help. I'm in the middle of the Bible belt here and people aren't too good at questioning the mainstream. I don't expect most of the doctors here to be different.

 I will try the NACi challenge although I am skeptical that it can indicate CPni exclusively. I do seem to have some markers for Porphyriai. I have found some tests I can take for that. What test did you take that revealed your CPN?

Tests for Porphyria on directlabs.com:

Porphobilinogen (PBG), Quantative, 24Hr Urine
Measures levels of porphobilinogen in the urine and is an initial test for Acute Intermittent Porphyria. Specimen must be frozen
Retail: 102.00	Our Price: 81.00	Fasting: No
Porphyrins Profile
measures seven porphyrins, total porphyrins, and two ratios
Retail: 290.00	Our Price: 232.00	Fasting: No
Porphyrins Random Urine
Random Urine
Retail: 118.00	Our Price: 94.00	Fasting: No
Porphyrins, quant 24 hr. urine
Quantitative 24 hour urine test
Retail: 118.00	Our Price: 94.00	Fasting: No

 

Do you have a recommendation?

I did recently consider a pathogen and started looking into Lyme about 3 months ago. CPn might be a better fit for me although I don't have any physical symptoms I've read about (paralysis, pain, etc.) Lots of mental symptoms alongside the fatigue. I have had some successes, especially this year, with things like Selenium, Chlorella, Pregnenolone, Pantething and PABA. Enough to show me that there is a way out for me if I can find it.

 One thing that is curious to me is that at times this year I have been without symptoms for hours at a time. Cured, if you will for a good part of the day. I'm not sure how to explain that. Problem is that something might help today or for a few days then stopworking. I can take the same thing and eat the same thing and not get the same benefit. That got me thinking that there may be something alive inside of me that is responding and changing with me. ??? Who knows.

Anyway, I appreciate the help from yuorself and everyone here. Its a shame that any of us have to go through this. What doesn't kill us makes us stronger eh?

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

Bio,

Before wanting to "believe" the NACi challenge, I did a little research on what it actually does.  THIS page explains alot of how and why NAC works on CPni:

"...N-acetyl cysteine, which, being a thiol antioxidanti, is a good candidate for the reduction of disulphide bonds in EBi coating proteins. It is readily available as a health supplement without the need for prescription..." 

If you want to research a little more about disulphide bonds like I did, you can read how breaking them is used, HERE for permanent wave treatments for example and of course how disulphide bond protect the bacteria so breaking them with NAC would definitely have an impact of the EBs of CPn.

Chlamydia pneumoniae

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Bio, just wanted to add, that 15 years ago I underwent removal of all my mental filings and 1 root canal at the time and then had metal detox with DMPS IV. Yet, 15 + years later, here I am still. I would say that it helped somewhat to take some load off my immunei system but I have had a much more significant response to cap for cpni. 

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.