December 20, 2011


here's my latest M.U.D. (Medical UpDate) and the scoop on the outcome of my appointment with DR H. i have super news to share! 
i have been OFF of all abx since aug 31.
yup, you read that right...i've been OFF both oral and IV abx for nearly 4 months.

i'll give it a moment to sink in... after all, it is mindbogglingly, fantastically awesome news to share.

yup. doing the happy dance.

i have been ON aggressive oral abx treatment since april 2007...and IV abx since jan 2008. so for me to be OFF of abx for the past 4 months and be doing (relatively) well indicates that my lyme and co-infections have been brought down to more manageable levels and my immune system is beginning to do what needs to be done in order to keep them that way. 

clearly, this is huge progress. 

i have NEVER been able to maintain any level of health OFF of abx in the past. often, there has been a very fast deterioration and a very rapid return of debilitating symptoms during previous trial runs of drug holidays. if co-infections are at a high load, lyme rears its ugly head very rapidly upon withdrawal of abx treatment. however, this has not been the case with me this time. we've not seen any indication of a regression. in fact, i am actually continuing to get stronger and improve. that is an awesome and remarkable gift. DR H believes that this is a good indication that we have finally beaten both my babesia and bartonella infections into submission. at my appointment, there was no talk of "remission" for either of those infections or lyme but i'll take a rendering of "submission" for the time being. that sounds like music to my ears and for now, DR H is continuing to keep me OFF of ABX! HOW AMAZING! 


i am not able to go so far as to have my PICC line removed. we are not at that stage yet. DR H is concerned that my body is in a sort of 'holding pattern' right now - and that the scales could easily tip either way. partly, because we've seen improvement with me before...only to have it followed by a regression of epic proportions. even tho' i'm doing better and am getting stronger, DR H is very concerned that i am in a very fragile state...after all, my nutritional intake is so super's pretty much a non-nutrient intake actually. this does not bode well for building my body's strength or defenses.

since september, i have been intensely reactive to and unable to eat any fruits and veggies. this is certainly no way for anyone to be at the best of times let alone when one is needing to eat in order to build up and strengthen the immune system. this is a critical and crucial time. my body needs to be fueled properly in order to keep fighting...and yet, right now, eating healthfully makes me terribly ill and toxic. i know, right? so bizarre.

basically, i can eat meat and simple carbs...simple being the operative as even complex carbs are triggering toxic side effects with me. i have to watch my fat intake because i have above normal levels of lipids (fat) in my blood. even more bizarre. i am like a skinny fat person.  the food re-activity is confusing and frustrating. i LOVE vegetables. that is what my body has always naturally gravitated to...and now, they are quite literally the death of me. so what's a girl to do? for starters, the short term plan is that i will be on on IVs to address my nutritional deficiencies and supplement several of my depleted mineral levels.

and long term? am i looking at a future devoid of fruits and veggies? i can't imagine. but no one really knows what to do with me. over the next little while, DR H is going to be networking with some colleagues to figure it out. we do know that this is most likely related to my mast cell disorder. and if i start to explain THAT, this post will morph into a lengthy and very confusing scientific journal entry...while it is complex to explain, it is all rather fascinating (to me, anyway) so i'm working on a post that'll explain it as simply as possible as soon as possible.

there is much more to talk addition to dealing with my nutritional needs, over the next several weeks my treatment will be primarily focussed on bringing down my viral load (which is very high), and addressing my immune deficiencies (i have issues with both igA and igG deficiencies) and tweaking the meds that are part of the treatment protocol i am on for my MCAD/mast cell disorder.

am i done with abx treatment for good? no. DR H believes i'll still need another round of IV. not sure when and not sure for how long. am i out of the woods yet? no... but PRAISE GOD, there is LIGHT! i feel it. i know we've been at the place before where we dared to think that we could see a pinprick of light at the end of this long, dark tunnel only to fall down the rabbit hole again.

but i'm more hopeful than i've ever been before that my improvements thus far are and will be sustainable...that hope filled confidence truly came to light for me about a week ago.

i was crawling into bed one night and as i was doing so, i had a very odd thought flash thru my mind. i was thinking about how i couldn't wait for the 'morrow. it stopped me short in my tracks...

'hold on,' i thought, 'why am i feeling excited about tomorrow? i have no special plans.' 
i nearly toppled out of bed when i realized that it was because i wasn't dreading the day to come...the 'morrow no longer felt like a dreadful burden to bear. 

and then the flood gates were released and the tears poured forth... as they do again as i write this and re-live that strange, foreign, amazingly wonderful moment when i experienced the simple pleasure of just being alive. 

i haven't felt that way in 6 years.

i do believe it is the dawning of a new day. 


Renee said...

This is wonderful news...wonderful news!!!!

Kathy said...

So happy for you, friend. Great, great news!!!