Falling Through the Holes in My Brain

Submitted by katman on Thu, 2013-04-18 11:31

Or:  spin, spin, spin, or drill, baby, drill.   Most other things are really good.  I have gone from a walker to my morning hour of near normalcy, then back to being flattened till about 2 PM.

I am now well into my second round of abx, having done four years, four months, going back to the bottom, then nearly four years of five abx. 

The battleground is  now behind my eyes and the fore top front of my brain.  Go on - laugh, but I can FEEL it.  Who ever knows the real locations of the activities in the brain is shaking her/his head by now bu I am the only one in there (ha), and this is how I describe it.

This has gone on for at least two months.  I am fervently looking forward to being done with it.  Most mornings while walking to the barn, I tell Richard to remind me later how well I was walking.  Then less that an hour later, I have bad balance  and can stagger around and then am happy to sit at the milk-machine and let Richard do the running back and forth.  Then I take my morning abx, stagger to the house, eat after the required hour, and crash.

It is now 11:30 and I am waking from my "drug-induced stupor" and (sort of) writing.  There is so much I want to do.  I hope this thing goes away soon.

Rica

Rica, I am totally bemused: if you feel near normal until you take your first abx of the day and then feel flattened until two, why not just stop?  You have been taking the stuff for about nine years years: far longer than Stratton recommends for ridding the organism, yet you are still taking five different antibiotics, two of which are very tough.  I never took more than three and haven’t taken any snce 2008, apart from a ten day course of roxithromycin to aid an infected finger.  You deserve a break and so does Richard...........Sarah  

Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Stratton says Cpn are like diamonds - they're forever.  Rica, have you considered heavy metal toxicity?

FM & chronic myofascial pain 2000; Cpn; EBV; lead poisoning; CAP since Jan 2009; Flagyl pulses & Azi M/W/F from Mar 2009; now also Cymbalta; Rivotril; Low Dose Naltrexone; Doxy.  Pain-free and heading upwards again.

Why do I continue?  I stopped once and sank back again quite rapidly very nearly to the bottom.  If I did that again, I think I would not come back.  Apparently the words "Untill there is NO REACTION" mean just exactly that.  Obviously, I have a strong daily reaction.  All the rest of me seems better than for at least eighteen years - only my brain seems to be the target.

Rica

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

Hopefully, we will have some answers soon, as medicine catches up with this bacteria and studies are done.  Both Katman and I said, early on, we didn't care if we had to take antibiotics for the rest of our lives, as long as we could maintain the recoveries we've achieved.  If that becomes necessary, so be it.

I stopped taking abx full-time last summer.  I delighted in not having to parcel out so many pills and I delayed doing an intermittent treatment until about a month ago.  Oh, my gosh; the meds must have hit SOMETHING this time, because I got a continual dull pain in my right hip and my right thigh developed a weird numb, but not numb, feeling.  It was no coincidence; it occurred within two doses of doxy/azith.  I went into full-out anti-inflammatory mode and doubled my antioxidants without even thinking about it.  Now, I have a sparkly feeling in the skin on the front of the thigh, similar to the feeling you get when your foot or leg 'falls asleep' from lack of circulation, then the feeling returns.  Obviously, something is being worked on in there.

This is probably some regeneration my body was working on, anyway, so I'm not panicked.  Rica doesn't sound panicky, either.  I think it's one of those things we 'old vets' of the protocol accept as our 'normal'.  We know how much we've recovered, we have faith in the science of the protocol, but we know we were damaged by the disease and it will either take a long time to fully recover or we might just have to accept that certain things will never be perfect for us again. 

Maybe I'm wrong, and I'm sure you'll correct me if I am, Rica, but this sounds more like a frustrated report than a cry for help.  Sometimes, it's just frustrating to encounter yet another hurdle when you think you're zipping along just fine.  I also know, every time Rica's had a hurdle like this, she is always on the verge on another breakthrough.  (I hope that's what's happening with the skin on my thigh).  So, tell us what you need, Rica.  Always here, always will be...

 

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

My experiences are the same. Maybe we have more then one bug, not only Chlamydophila pneumoniae, but another alike goddamned bug like borelia, bartonela ... Who knows? So we perhaps need longer treatment than other afflict people...

On CAPs:12/01/2005 till March 2013; 20 years CFS,IBS, fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension... 

Dam I just wrote an response and with all the checks and rechecks the website makes you go through it is now gone.

So Rica,  Do you really want to have this conversation out here in public.  I have thoughts for you.   Let me know I can share them publically or privately.   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

Awww - me too just sending hug.  Think you're great.

Po

x

Female UK. High EBV, CMV. In winter 12/13 waslow Lyme and Cpn-tx'ed 6mths. Sept 13 -ve lyme, +ve erlichia, bart &Yersinia, starting tx for co-infections also aspergillus

Thanks everyone for comments and commiserations. This was, as MacKintosh speculated, not a "cry for help", but simply a statement of what is going on in the battle for my mind.  This is much like previous battles - ALL of which have been won - it is just that I am now much more aware of what is going on.  The mental and physical changes that take place within hours are very dramatic.  When we get up I am close to my probable future "normal", then am knocked down for much of the day, then slowly re-emerge for my evening reprieve, which lasts until an hour after I take my evening abx and NAC.

There is absolutely no thought of stopping abx for any period untill these bugs are banished.  I may qualify that and say that for shows I delay my morning abx till after we show, and for the National Show (Minnesota this year) I may skip the entire show day abx.

Today is my rare "day off" from Azithromycin.  I take one-half almost every night, but occasionally take a day off.  I took my abx two hours ago and am not "spinny" or staggery or muddle-headed yet.  Many years ago, when I had recovered from my first pneumonia or flu, every time I sat down I would feel that I was almost endlessly falling back.  It was not an unpleasant feeling and has been with me on and off for decades.  With the last two months it has recurred.  So the story continues....

Rica

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

Rica, I am really worried about you and you really do deserve a quiet life with Richard and the goats: after all this time you must have got rid of any bacterial pathogen daring to lurk within.  Why not try just taking doxycycline or minocycline as an immunomodulatory.  I don’t know because I never get headaches but what you are feeling inside your head might just be a migraine or somesuch thing................Sarah    

Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.