27 Apr 2018
Author
paron
Title

Where do I send people who ask, "Do I have C.Pn.?"

Body

It seems like this has been answered dozens of times, but it's a stinker to find. "Do", "I", "Have", etc. are too common for search results to be helpful. The Handbook has a fine page about the testing problem, but doesn't really lay out what to look for instead. Maybe it's somewhere else, but, like I said, it's hard to find. You can glean some from the handbook "CPN Simple", "The Basics Page", and "Advice to Non-medical newcomers." I wonder if we could do a "self-test" page, like one of those "Am I an alcoholic?" or "Am I passive-aggressive?" tests.

Comments

Michèle

8 Feb 2007 12:29 pm

It makes a great deal of sense, but it's a mamoth task, considering the number of conditions could be put at the door of Cpn.   Maybe it should be based around Cpn, Cpn can cause you to have these symptoms..... Tick more than 5 and you probably have a Cpn infection....

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

katman

8 Feb 2007 09:04 pm

Good idea, as usual, Ron. But we do have the NAC test, which a majority of people seem to react to. It's cheap and easy and can make a believer out a skeptic who reacts.

 

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 38 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

katman

9 Feb 2007 08:59 am

NAC takes the place of Amoxycillin and instead of raising liver numbers it breaks down one of the life stages of cpn and protects the liver at the same time. I just searched for it on this site and nothing really helpful came up so I am trying to explain in my bumbling way about NAC. It is usually suggested as the very first thing to do on this protocol mainly for the two reasons above. Most of us react with some symptom such as: nasal drip (understatement), aches of joint or elsewhere, or take your choice ......The main point is to take it and build up to 2400 mg. a day. This took me 8 or 10 months but some take much longer. It functions as an antibiotic in that it actually kills by marooning with no hope of rescue - a fitting and satisfying feeling for us in this battle.

 

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 38 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

cypriane

9 Feb 2007 11:38 am

To quote Dr. Stratton from this post from JimK: "...N-acetyl-cysteine will break the disulfide bonds in the elementary bodies just as effectively as N-formyl-penicillamine, which is the metabolite of amoxicillin that does the same thing..."

For an interesting discussion of the specificity of NAC with regard to killing Cpn EB's, this thread started by Norman is well worth visiting.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

paron

9 Feb 2007 11:55 am

It just happened again: a lady on the CFS listserve mentioned that she had preeclampsia during her pregnancy (the baby is 10 years old, now, so that part's ok). She said her preeclampsia had nothing to do with her CFS/ME!

I referred her to http://cat.inist.fr/?aModele=afficheN&cpsidt=14514562 and suggested she come here next. I wonder how many other co-morbid conditions she'll discover if she does?

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

Elinor

10 Feb 2007 05:08 am

Ron I though your comment about herxing from green tea was meant as a joke until I  found this

   Biochem Biophys Res Commun. 2007 Feb 2;353(1):177-81. Epub 2006 Dec 11.

Antimalarial properties of green tea.

Sannella AR, Messori L, Casini A, Francesco Vincieri F, Bilia AR, Majori G,
Severini C.

Department of Infectious, Parasitic and Immunomediated Diseases, Vector-Borne
Diseases and International Health Section, Istituto Superiore di Sanita, Viale
Regina Elena 299, 00161 Rome, Italy.

We show here that a crude extract of green tea as well as two of its main
constituents, epigallocatechin-3-gallate (EGCG) and epicatechin gallate (ECG),
strongly inhibit Plasmodium falciparum growth in vitro.

Both these catechins are
found to potentiate the antimalarial effects of artemisinin without interfering
with the folate pathway.

The importance of these findings and their mechanistic
implications are discussed in view of future therapeutic strategies.

PMID: 17174271 [PubMed - indexed for MEDLINE]

Elinor ..... from England UK on Wheldon protocol, doxy/roxi/tini pulses for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Jim K

10 Feb 2007 07:44 am

Ron- I've thought about this also, from the way a good Cpn doc gathers the medical history threads together to formulate the "index of suspicion" which warrants an empirical Cpn CAP. We'd need to do this with overview from our medical folks, and clearly label it as "suspicious symptoms" rather than diagnostic, so we aren't practicing medicine here.

One source of useful info may be the results of the latest survey, since it includes a long list of symptoms. We may find some useful marker symptoms, or collection of common symptoms which cross disease entities. We'll see...

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

8 Feb 2007
paron