I just heard Dr. Brownstein present his iodine information at the Age Management Medical Conference. I can see a possible connection between low iodine levels and fluoroquinolone damage in some patients. I suffered severe tendon and nerve damage in 2003 from several weeks of high dose Levaquin and Avalox. The damage seemed just like the Lyme disease symptoms, and I thought it was a herx. The symptoms have not resolved in five years. I no longer think the symptoms are ongoing Lyme disease, or at least, not entirely.

If you haven't seen this blog from the Germantown, MD lyme doctor it's a gem. Lots of treatment discusstion and discussion of L-form bacteria and the medical community. Mostly very good inside information about how he adapts the antibiotic approach to each individual. He discusses Marshall protocol. Lots of clinical experience. 

 

The top post on this page he mentions CPNi. The entire blog is terrific: 

http://lymemd.blogspot.com/2008_05_01_archive.html

flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=071964

For those of you who have been tested for CD57:  LINK  What were your results? Have you ever tested positive for Lyme, too? I never have (though some test results are still pending). Yet, my result is 72. And, that's after being on CAPi for 2 years, now:

 >200 is normal

< 20 severe illness

0-60 is seen in chronic Lyme disease

> 60 Lyme activity indicates improvement

 

 

Okay - I'll confess - I am not much of an activist but my husband's illness has made me an unwilling willing activist.

So many here are both CPNi and Lyme co-infected that I will throw this out there

On September 24th, Senator's Dodd and Lieberman are sponsoring a luncheon briefing in the Senate Russell building.  All members of congress are invited.

This is a briefing in which attendees will learn about lyme and co-infectionsi and it's effects on Americans.  There are two bills before congress S. 1708 and a tandem version in the house that allocate resources for studies, education, improved testing, etc...

Please email your US Senator's and Congressman and ask them or a member of their senior staff to attend this informational luncheon briefing. 

 Lab Tests Lack Sensitivity

By Lorraine Johnson, J.D., MBA, Executive Director

 California Lyme Disease Association

A few weeks ago Joyce peeked my curiousity regarding biofilms, gallium and persistent infectionsi. 

It's an area that as I have delved further into over the past several weeks,  I have come to realize has very important implications for the treatment of stealth infections such as CPNi, mycoplasma and borrelia.

What follows is a synopsis from some of my personal research notes.  Please don't consider it scientific fact as I didn't take the time to footnote but I did want to throw this topic out to the group for pondering and possible discussion.  

Biofilms for those not familiar are the most common mode of bacterial growth in nature. 

Since many here are lyme/cpni co-infected, thought I would post the following:

Here is the lay person version of the information. 

And Here is the scientific version from the CDC website. 

Article gets into the differences European lyme vs North America lyme as well as disease carriers.  Interesting in Europe it's birds.

This was posted on eurolyme - well worth watching:

Real-Time High Resolution 3D Imaging of the Lyme Disease Spirochete Adhering to and Escaping from the Vasculature of a Living Host

Scroll down towards the end of the article for the videos (S1 - S7). Yes those are lyme spirochetes you can see in real time within a living (animal) host. Wouldn't it be amazing if we could see Cpni this way one day?

Some shocking news. My first cousin is in the hospital and seems to be suffering from a cpni or lyme infection. She has been sick for the last couple of months (fatigue, swelling joints and back, flu like symptoms etc.) and now its so bad she is on a IV in the hospital. I just got off the phone with her mom (my aunt). and she said they put her on doxyi, Methotrexate, and some other drugs I forgot to write down.  I told her she needs to tell her doctor the reason that the doxy isnt working is becuase she need to stack it on the zithromax. I explained the protocol and gave her this website. I also said she needs to get tested for cpn, myco, and lyme.

Just wondering if anyone here had the facial and cranial nerves involved in thier lyme and if so, could you tell me how it felt when it was disapearing?  Thanks

A few questions please help here if you can?

Is CPNi succeptible to 3rd generation cephlosporins?It seems to me that it is not, is this correct?

Is lyme succeptible to quinolones and if so how effective is it? I seem to recall that is effective against the cystic form is this correct?

From what I know, cystic lyme is succeptible to metronidazolei corrrect?

Finally, a cpn question... have we established if metronidazole kills reticulate bodies or not?

Heres my thoughts.. my facial pain outlines the facial nerve indicated in lyme, so it still has me concerned being that if this was /is lyme I believe I should be on 300 doxyi not 200 so Im trying to pull at any alternative definitive strings that i can.

Right now I am in excruciating pain and have been for nearly three weeks. I was diagnosed with Lyme in 2002 after being incredibly ill since 1999. I first had swollen lymphs, followed by pnuemonia that would not respond to abxi of any kind, eventually dropping out of school and beginning the travels through so many doctors and specialists I cannot begin again to even repeat.

 

At this time I have heart problems and brain problems that showed up on cardiology and mri.cats.

 

We have a lot of Lyme's folks who have discovered that they are co-infected with Cpni and are seeking treatment help. There are some important differences in treating Cpn, the secondary porphyriai for example and how to differentiate it from herx, the energy parasite nature of Cpn, as well as Lyme's problems less common in Cpn infectionsi such as Babesia and so on. We need a page that addresses these from someone who has been there and knows the treatment of both. Any volunteers?

You might also use this thread to post comments of similarities and differences and we can use it to collect these.