August 27, 2009

FINE DINING WITH DR H

i had my monthly phone appointment with DR H today.

i was hoping he would take me off my pre-digested food diet.
no such luck.
when i complained about the limited amount of pre-digested goo choices available,
he quipped back that he was pretty sure he had some pre-chewed food lying around his office.
he cheekily offered to send me some.

then he ventured to add even more pills to my ever growing smorgasbord of pills, enzymes and extracts.

MY FINE DINING BUFFET
-compliments of DR H


ok, i don't actually use the martini shaker, i just threw it in for the fun of it
but i do drink my detox meds out of the martini glass now - they go down much smoother!



i am not currently able to eat any food without my body reacting to it - (i "puff up" 5 to 10lbs overnight) for this reason, aside from small amounts of veggies and fruits, my buffet of pills and liquids makes up my entire daily diet.

now back to my appointment with DR H

here's the good news:

DR H started me on this pre-digested diet of amino acids, minerals and therapeutic enzymes (endearingly known in our home as "The Goo that smells like Poo") at the beginning of august.

ah, yes, plug your noses kiddies,
'cause
the goo is staying
but with your free hand
gimme a high five
'cause
the goo appears to be working!

most notably there has been a significant increase in my energy and stamina levels, my mood swings are less severe....and my toxicity levels are slowly getting better

my weekly lab work is even starting to reflect this stabilization
over the course of this month, there has been a very slow, but definite improvement with my WBC (white blood cell count) and an increase in my WBC differentials

my WBC which is almost never within normal range, is now within range and steadily increasing.
amazingly my neutrophils and lymphocytes which are chronically very low, ("flagged" on lab reports) have slowly but steadily risen since starting "the goo" too

that is exciting news

here's the tough news:

at the same time that there has been marked improvement, in other areas there has been a steady decline in my health.

my babesia (BABS) infection is growing stronger.
BABS is notorious for infecting and destroying the RBC (red blood cells). this is reflected in my blood work and the steady increase in my symptoms that are associated with an active BABS infection.

most notable symptoms are drenching night sweats, hallucinations, insomnia and fractured sleep patterns (meaning i never have a deep sleep - even when i am "asleep" i am aware), tremors, ever-present headache,
and shortness of breath episodes.

other symptoms that are getting stronger are related to both my BABS and Lyme infections

i am having rheumatoid arthritis like flares of swollen, stiff and painful joints, arrythmias, CNS disturbances, internal head pressure, neck stiffness...etc.

but
aside from that,
i feel pretty darn good... lol...

and
in spite of all that,
"i don't look sick"
actually,

i'd venture to say i still manage to look good...



...aside from some alarming hair issues, that is.


here's the wait and see news:

in january, when i saw DR H in office, he noticed a pattern of symptom cycling that occurs with me. it runs in an 8 week cycle. meaning for 6 to 8 weeks, my symptoms and level of disability greatly fluctuate between very severe and intense (which means bedridden) to barely bearable (my couch-ridden days) thrown in that time frame is a smattering of random semi-functional days. (and of course, if i am on meds to fight lyme or my other tick-borne infections, than herxing is thrown into that mix)
then
lo and behold
roughly around the 8 week mark, i will have a good run of semi-functional days. it lasts anywhere from 1 to 2 weeks. during this time, provided i take frequent rest breaks, i am able to do much more than usual.
DR H says this is the way that BABS plays.

i am currently experiencing the upward swing of one of these cycles.
so
the question becomes
am i experiencing some relief and more functional days "just because"
or
is the goo really making a huge difference?

only time will tell
i must wait and see

the foreseeable future and prayer requests:

1) i will remain on the goo for the next 3 to 6 weeks
this should be enough time for DR H to assess whether or not my improvements are 'real' and not just part of my 8 week cycle
if improvements do not continue, i will be forced to go from the oral goo to all of it run through IV

so if the oral goo is so gross and smells like poo then wouldn't IV formulations be more preferable?

yes and no.

the answer is complicated
but
the short of it is this

the IV formulations are extremely costly and complicated
but they are a more exact science
i (actually my blood) would undergo numerous nutrient/biochemistry testing
based on the results
specialized amino acid and mineral IVs would be formulated by a doctor who specializes in cellular nutrition
all of this would need to be done in the states

however
while the pre-digested goo is not exactly cheap it is more accessible
but
it is a lot of trial and error to find the right combination for my body's needs
and
iit's success is dependent on my body's ability to absorb it through the digestive track rather than bloodstream.

there are pros and cons to both.
DR H has this other doctor (DR G) on stand-by should we need to move forward with these specialized IVs.

please pray for God's provision should this treatment become necessary.


2)
DR H does not feel i am strong enough yet to return to aggressive IV treatment for my lyme. this is concerning because i have now been off of all IV medications since the end of May.

HOWEVER

he has re-started me on 2 meds for the BABS infection

3) on Friday, i will start alinia and malarone for my BABS infection
i am on a full dose of alina and a micro dose of malarone

re-starting meds to fight my infection
means that
herxing will commence shortly

herxing is an unimaginable horror to endure. it is not explainable - unless you have lived through it, it is impossible to comprehend.

please pray for me (and my family) as i (we) prepare to live through this difficult yet necessary part of the healing process again.


historically speaking :)
hey, after 2.4 years of herxing cycles i can refer to it as historic,
i have a very strong herx at the 3 week mark of starting meds
taylor's 17th birthday is roughly 3 weeks away
i was completely bedridden for his 16th birthday last year

please pray that i will be well enough to celebrate his birthday



there is more but for now that is the bulk of it.
and
besides
i'm about due
for another round of goo.
and so
i must go

i cannot type and write rhyming prose
while drinking goo and plugging my nose

too-da-loo!









.







3 comments:

btrflynana... said...

Shannon
God bless and hang in there...you're a fighter! Keeping you in my prayers.
Hugs Karen

Kathryn said...

Hey, Shannon, just caught up on your last post. I'm thinking when all this is said and done, becoming some sort of medical professional seems like the logical next step. You have become quite the expert on all things physiological. Praying that you will not be couch/bed ridden for Taylor's birthday and that it will be a wonderful celebration for all!

Kara said...

Hi Shannon, I have been following your blog for quite some time. This is my first time leaving a comment. Just finished reading all about your vacation and trips. They are fabulous! So glad you seem to making progress!!

I also have Lyme. Was diagnosed in late 2007 and we guess I've had it for about 19 years.

While I was still undiagnosed, I lost the ability to assimilate anything through regular digestion and became VERY malnourished. I was also allergic to EVERYTHING. I was put on TPN (Total Parenteral Nutrition or IV nutrition) for a total of 19 months. It saved my life.

But this I will tell you -- do whatever you have to do and more to avoid it if at all possible. There is no better way to feed infections than to have nutrients dripped straight into your blood stream. The infections can uptake that nutrition faster than your body can assimilate it. Although the nutrition did save my life, it ultimately almost killed me because my infections grew to the point they ravaged my body. The Lyme suppressed my immune system and then everything else took off.

We finally got my intestines working again and I've been eating and assimilating fine for 18 months. Still lots of hurdles though. But I'm doing OK.

If I had only been on it for a few months -- like 3, it would've been fine.

I'm praying that everything will work out and you will not have to go this route.

Stop by our blog. My husband writes it. It is mostly just about our family but my story is on there -- in the archives. We do bring up Lyme now and again. We have all been diagnosed with Lyme.

Hang in there and good luck killing off the babs. Hugs, Kara