Following my own advice - sort of

Submitted by hdwhit on Fri, 2008-09-12 17:38

I have blogged several times suggesting that people (like me) who are doing the CAP on their own stick religiously to one of the protocols until they had enough experience with it to know how they were going to react and thus have a "baseline" for comparison with any changes that they make. 

I have followed this advice for a year through 12 flagyl pulses.  Having lamented about the fact that I was not getting the kind of reaction to the later pulses that I got to the earlier ones, I decided to make a change.  Knowing the NAC and Amoxicillin had the same effect on CPn Elementary Bodies, but that Amoxicillin was also effective against other pathogens that might be co-infections, I decided to add Amoxicillin to my antibiotics.  

Approximately five days after I started, I noticed a small rash on my left arm.  Since we have poison ivy all over the backyard I thought nothing about it.  I have taken Amoxicillin many times in my life and do not have an allergy to it.  I just upped my Quercetin intake and the rash went away in a few days.  Then a larger rash popped up on my right arm.  It has not gone away completely when it was followed by another rash on my right leg.  Then my left leg.  Then my neck.  Before too long I was covered head to toe with a rash.  The rash was joined by chills and muscle pain.  It took about a week to go away.  As it did, my energy levels started to improve and my cognitive fog substantially decreased.  I'm assuming that this was a herxheimer reaction and that I'm killing something more than just intestinal bacteria. 

My first thought is Lyme or some similar disease.  Back in 2006 all the doctors were in such a rush to slap an M.S. label on me that they wouldn't even test for Lyme when all this started (the state says there's no such thing as Lyme in Texas anyway - unless you got it somewhere else and imported it - so what's the point in testing for something that isn't there?).  This even though I routinely travel to areas where it is endemic and both a former supervisor and co-worker tested positive for it.  So, I think Lyme or an associated disease has got to be considered a possibility.  I'm trying to get in with a Lyme disease doctor (the particular one I've located apparently believes in chronic Lyme since she's constantly fighting with the state over whether its ethical to treat for such a non-existant condition) and we'll see what she has to say if I am successful in getting in to see her.     

hd, There IS Lyme in Texas. Don't let anyone tell you there isn't. A few months ago I learned that a woman who used to live on our property had Lyme disease. It made me wonder if Steve got his in the back yard instead of New York where he grew up. I got her phone number and spoke with her. She said she got her infecting tick bite on a camping trip near Tyler.

The step-daughter of an old friend in our area has Lyme, as does her husband, and very sadly, their baby. The husband hunts deer in Texas, and apparently he was the one who brought it into the family. There is controversy about whether or not Lyme can be sexually transmitted, but the controversy over cross-placental transmission is much less (too much evidence).

I recently asked our Dr. X if he thought Lyme was transmitted in intimate family life, and this is what he said: "I see about 110 patients with Lyme, and of those, 70% have other family members with Lyme symptoms."  By the way, Dr. X is located "deep in the heart of Texas," and he's not even a "Lyme" doctor.

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. 


I recalled reading something about Non-allergic amoxicillin rash and wondered about what it might be.

I would be willing to accept your explanation as it's prob due to some sort of herxheimer/cytokine reaction.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Thanks.  According to the article I read on penicillin rashes, the non-allergic rash starts on the trunk, doesn't itch and is generally associated with people who are taking it for the first time.  My rash started on my arm, itched like crazy and this is probably the twentieth time I've taken amoxicillin so I figured the likelihood of it being a non-allergic rash was lower than that it was a herxheimer reaction. 

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

hd - aside from lyme testing - through Igenex is the only lab I would recommend for lyme testing - you could try an empiric trial of a cephalosporin antibiotic to see if you "herx" from it -

CPN won't respond to a cephalosporin but lyme sure will.  One I like is Omnicef.  600mg once daily.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

hd- I can't imagine that you, of all people, wouldn't follow your own advice.Image removed.

"Chills and muscle pain" sounds like LPS endotoxin reaction, which could be EB's or could be any one of a thousand bacteria including intestinal normal flora (all bacteria use LPS endotoxin as part of normal metabolic processes, including the "good bacteria" in the gut). But the rash is really curious. Keep us in touch.


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral