Blog posts

No appetite?

Submitted by Mariapatri on Thu, 2008-08-21 02:05

No appetite?

I have no appetite at all and have a really increased smell, which makes the eating more difficult.  This without mentioning when the trachea pain comes, with the neck stiffness and pain in the thyroid which, all together make my eating harder…  and, strange, I have gained more weight than in all my life.  In fact I never gained weight until this past year!

The swelling of my hands is getting better with the Aloe I guess? but I still have pain everywhere.  I have not had the heart problems, thank God, blessings!!!!! 

fibro and cpn

Submitted by steveco on Wed, 2008-08-20 21:28
              Hi my name is Steve, I have a question. My wife, Linda and I have both been diagnosed with cpn. My question is since I have the respirtory, congestion and pain symptoms ,my dilutions numbers are 1140 on my test I'm getting treated for cpn. Since Linda has the fibro symptoms and not the respirtory they don't consider there is reason to treat but she is in considerable pain. Her numbers are 514. Also how much do these numbers mean relative to the rest of you. People with fibro please help!!!!

the pattern continues ....

Submitted by blackfoot on Wed, 2008-08-20 17:01

my observations on Flagyl pulses 7 (july) and 8 (August).  Pulse 7 I did 4 days, pulse 8 I did 3.

Well the patterns continue in their unmistakable way.  From Day 1 of the first tablet to usually 12 days later no major reactions.  Perhaps short-lived or occasionally wiped-outness, but nothing majorly tricky.  Then days 12 - 22 the REAL reaction.  DAY 18 in BOTH pulses were the worst nightmare; just pain, weakness, shock headaches, and overwhelming fatigue.  After around day 22 just feel fairly normal again ...  In all my pulses I have a period of about 3 - 5 days which are the worst, as i said around 2 weeks after day 1.  How strange!  I know we have commented on this delayed reaction many times, but mine is like clockwork now!


Submitted by Daisy on Wed, 2008-08-20 15:41

Last Friday, my husband completed 7 days of Alinia 500mg BID.  Curious and amazing drug that Alinia.

Alinia or nitazoxanide is a thiazolide anti-infective that has been found to be active against anaerobic bacteria, many protozoa and quiet a range of viruses in cell culture models.  It's currently in clinical trials for treatment of chronic Hepatitis C.  It has also been found effective against C. difficile (although not FDA approved for this use) as well as borrelia cystic form (also unapproved use).

Does anyone have experience with Low-Dose Naltrexone (LDN)?

Submitted by Bluebird on Wed, 2008-08-20 14:02

I heard about this recently from a naturopath, and have had a look at their website.  They claim it is very effective for ALL auto-immune conditions.

I'm just wondering if anybody here has tried it, as I heard that possibly Dr. Powell prescribes it, or at least knows something about it.  Is it something you could do in conjunction with the CAP? 

I wonder if it will help the immune system to eradicate Cpn-type infections? It supposedly stops it from attacking itself (thereby relieving inflammation) -- wouldn't that then give those embedded bacteria a clean slate to just proliferate without hindrance?

Just curious if anyone here knows anything about this.  Thanks. 


Submitted by vivo on Wed, 2008-08-20 12:14


Good Evening All,

Is there any way to convince a GP you really DO have Cpn and get them to prescribe for you?

The doctors at Breakespeare hospital requested a stealth organism panel last year ( done in USA ) which came back high for Cpn and Lyme !! They also did an ECG on me last week and it appears I have likely had a mild heart attack ( I can pin-point this to 1997 ) followed by a mini-stroke 2004.

Dr Munro and Dr Daymond ( at Breakespeare ) understandably won't move forward till the cardiologist has done investigations - so, 3 months B4 info gets to my GP I guess.

My GP dismisses the IGg results as 'not infectious' !!!!!!

muscle pain from treatment

Submitted by steveco on Tue, 2008-08-19 20:54
   Hi my name is Steve and I've had horrible congestion for 15yrs. Was finally diagnosed with cpn in April.Been on cipro  avelox  doxy since. On doxy I became very ill with congestion and larynitis, my lungs became very irritated and have been bothersome since. At present I'm on azithro congestion is better but I have muscle pain that keeps me up most the night. Been getting 2hrs. a night. Any pain medication doesn't help. Any one else go through this?

A Walking Conundrum -- Perhaps a Dilemma

Submitted by Arttile on Tue, 2008-08-19 19:50

I began limping early in 2001. I only limped after doing .7 miles on the treadmill and I dismissed it as strange but meaningless. However, whenever I reached that .7 mark I could no longer feel or control my right leg below my knee. Nevertheless, I continued to function fairly well without complete sensation and worked out 3 times/week to ensure that. But my walking continued to deteriorate. In 2006 the neurologist decided that I had ms and estimated that I had another 10 years until I would need a wheelchair. He did not anticipate the rapid deterioration that followed menopause.