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!









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