Flare ups?

Submitted by sugarglider on Mon, 2011-10-03 03:38

I am now about 4-5 months into treatment with 200mg mino, 300mg roxi per day. I had a rough time of it early on and am still not pulsing. I'm not taking nac either as it makes me feel like sticking my head in the oven (even though it's electric).

I was just beginning to feel good, more energy, tolerating the antibiotics better, then wham, I'm back where I started.

Facial tingling, jaw/ear/neck pain, headaches, joint pains, neuropathy in arms and hands, stomach problems, strange sharp tingling pains in my fingernail beds even my teeth hurt! I'm at a loss to know why it has all flared up again.

I was about to try my first pulse and try to wean myself onto nac. Now I don't know what to do.

There is definitely something going on in my sinuses, and I'm convinced that I have an infection of some sort even though my cpn test was negative. Does cpn have a waxing and waning cycle that would explain these flare-ups?

Does anyone else have the sensation of blood pulsing in their head sometimes? This scares me :(

What is the best thing for damping down inflammation? I think my doctor is right, that I have vasculitis, probably caused by cpn. Should I be taking aspirin?


My post was lost.  I will try again with a shorter, more concise one.


Everything you mentioned, down to the "hurting teeth", I had.  They have, without exception, reduced to nothing or almost nothing.  The neuropathy came and went, still with me very mildly every day, as I am hit by the five abx that I am on.  But I can put in a full day's labor - and I mean labor.  We are cleaning the barn.  I spent all day carrying things and repairing mangers.  Today I will do it all day again.

Take heart and chip away every day at this devious bug.  Everything that you add that will fight it is a good weapon.


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

For inflamation while on the protocol ibuprufen should be better than aspirin. For me it works immediately and there is no need to take it for long. I take it just 1, maximum 2 days.

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

Hi sugarglider~

I'm sorry for your new symptom set.   I don't know if you have MS or CFS or what.   I have CFS and high antibody titers to Cpn.  I'm on doxy 100 mg bid and rifampin 300 mg bid.  In the 5 months I've been on these antibiotics my IgA titers for Cpn have dropped from as high as the lab measures to as low as they have ever been in me.  And I've felt better (not well but the best I've felt).  Oxymatrine and valcyte have also contributed to improved health for me.  

In July I had significant problems (read my blog---I think it's posted there). A low WBC was caught during this time, and my PCP thought a virus had reactivated in me.  I am also battling various viruses...HSV 1, Coxsackie B and HHV-6.   We also caught during this time a positive IgM for HSV 1.  The question is whether it was a true or a false positive.  I see both of my ID doctors next week and it will be interesting to get their perspective.

My point is....in me even though we are hitting the Cpn effectively and I'm feeling better that I can still have significant setbacks which are likely caused by viruses.  We documented this once in labs with regard to Coxsackie B and we may have caught HSV 1 in this recent set of lab data.

The same may be happening in you....viruses causing you problems while you are treating a bacterial infection.

Best, Timaca

on valtrex 500 mg tid