Unless All Dream Alike, You Must Not Ask Them to Remember It

Submitted by hdwhit on Mon, 2009-03-30 11:00

I had an MRI in January 2009.  The M.S. specialist ordered it because I have been having mild headaches at the top of my head that precede things "happening". 

  • For example, I had a headache that came on before I temporarily lost my ability to write a cursive "D" (and hence lost the ability to sign my name).
  • I also had a headache come on and when it had passed, my need to get up at 3:00 a.m. to go to the bathroom had all but vanished. 

The MRI was done:

  • At the same imaging center,
  • Using the same machine,
  • Run by the same technician, and
  • Read by the same radiologist

as the previous MRI (in November 2006) but for some unexplained reason, they chose a different "slice" size which limited comparability between the two scans. 

Based on the amount of space devoted to each subject, the radiologist report is less concerned with my M.S. lesions than it is with what appears to be an "aneurysmal dilation" in my carotid artery which due to that different slice size could not be confirmed so an MRA is recommended.  Right now the M.S. specialist and primary care physician are pointing fingers at each other saying the other has to order the MRA.  A new neurologist may help with this but I'll post on that separately.

The radiologist reports are interesting.  In November 2006, it identified two large and two medium-size lesions along with smaller lesions described as "too numerous to count".  In January 2009, "too numerous to count" is quantified at 21 lesions.  Some of these 21 lesions have increased in size slightly while others are unchanged.  The medium-sized lesions are smaller.  The largest lesion has doubled in size while the other large lesion has disappeared altogether. 

My primary care physician focused on the lesions that disappeared and so thinks the report is "encouraging".  The M.S. specialist's nurse told me he finds this particular mix of lesions growing while others were shrinking to be "atypical".  Of course, if the results weren't at least "atypical", what was the point of downing those 1,200 doxycycline capsules?

The November 2006 MRI was done nearly a year before I started the CAP so I have no way of attributing these results to the CAP.  What I do know is:

  • My supply of antibiotics is nearly exhausted.
  • There has been significant improvements in how I feel and how well I function while on the CAP so if I had it to do all over again, I would still do it.

HD, Have you considered mixing up you abx a bit.  I see that you have added INH with pulses.  Dr S has in the pst year been recommending a change to Clarithro for those with MS who have palateaued from what I have read here in the posts.  It is a macarolide and it has a shorter half-life than azithro and more of it stays in the circulatory system, which could be appropriate for Bb which is more active there than CPn, and it is available here in the US whereas Roxi is not and Roxi is also considered quite potent and for me 600mg was smooth to take difficulty is that it needs to come from across the pond.  Both Clari and Roxi are potent against Bb (Lyme) and other bacterial  infections that are persistent in the body.

Or perhaps you might thake azithro to a stronger potency and in a daily basis. You have certainly reduced your bacterial load since being on the protocol since Aug 2007 so the overwhelm that might occur with a stonger dosing would be less likely now, I know that you started just a few months after myself. 

Another shift that you might consider would be longer pulses of tinidazole, which may be more effective for other potential infections and it is easier to tolerate for a longer period of time in my experience.   

If you possibly have a co-infection of CPn that goes into a cystic form then longer pulses would be able to challenge that as well as the cpn.  Some think that for co-infections of CPn the pulses need to longer pulses once the CPn bacterial load is reduced. 

Just thinking aout loud from the top of my head about potential possibilities that I personally have considered, much of it based on posts that Daisy posted many months ago now.  Also I would consider looking at the potential of ruling out a bartonella-like infection and Babesia as well given you history of air hunger experiences in the past. 

Just some random thoughts.   Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support