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!









.

STARTING THE DETOX

We're home - got home late last night.

Today I started the detox program that Dr H has prescribed.
Currently, I'm not sure whether I want to hug or slug Dr H. Probably a good thing that I'm back in Canada!

I have spent most of the day in the bed exhausted and feeling simply horrible. To be fair I probably can't really blame the detox meds as we're starting with miniscule amounts.

I am probably just paying the price for my jet set life. Ha!

Anyhow, not a lot to say.
I'm pretty worn out.

And I'm feeling pretty old - my son is turning 16 in 2 days!

UNIQUE SITINGS IN PALO ALTO

I am feeling a lot better today so we decided to take in some of the local sites that are in and around Redwood City and Palo Alto.




Before we set off for our little driving tour, we needed to swing by Dr H's office to pick up some med supplies. I am slow to get going in the morning and our timing happened to coincide with the lunch hour, so we got there, just as Dr H was leaving for lunch. (Actually, relieved to see the guy actually takes a break - he looks so tired out!)

When he saw us he wanted to know what we were doing there AGAIN!
My quick thinking husband quipped, "Oh we're here to take you out for lunch!"
Oh man you should have seen the expression on his face!
It was priceless!
In fact, we were so entertained by it, we're thinking we might just pop by again tomorrow at lunch time!

After having a good laugh at Dr H's expense and hearing from Anthony that he's checked out my blog and is still blushing, we set off to check out Palo Alto to check out the Igenex Lab.

I have a definate warm fuzzy feeling for this lab. Anyone with LD will understand what I mean.



After checking out Igenex and having a nice little chat with one of the employees there, we took a little driving tour of Palo Alto. It was then that we discovered that there are some strange and unique things to be found in Palo Alto and surrounding area.









We ended off the day with dinner at a Sushi Restaurant. That was a strange experience as well. Upon first entering the restaurant, it initially appeared very traditionally Japanese, complete with several little bridges spanning coi fish ponds. However, upon closer examination, we noticed the walls were made of logs and there were taxidermied Canadian Geese hanging from the ceiling and ducks peering creepily from the rafters.

We're kicking ourselves for not having taken a few pictures.

It was a fitting end to a strangely entertaining day.

DR H AND HIS CHAIR

My appointment with Dr H was at 1:30pm today.
I was in bed until noon resting and trying to reserve my energy and brain power for my appointment.

The appointment went well. I faded about half way through it but we were able to cover a lot of ground during it. Both Graham and I really like Dr H and even have some fun with him.
He's a great guy and a super smart doctor even though he slouches like a teenager when sitting in his chair.

Graham took some pics of me and Dr H today - however Dr H asked that we not publicly show his picture as he was having a bad hair day.

His chair wasn't nearly as self conscious though. It happily posed for a public photo op.




And of course, I can't forget Anthony. Even though he didn't venture out from behind his little window today, it was still great to see him.



And make him giggle. And pay him a lot of money. He laughs. We cry!

It will take about a week to get Dr H's full medical assessment.


But here is the low down on what we discussed today and our game plan for the next phase of treatment.

I am making progress. Yes, it's slow but that is to be expected - fighting Lyme is a marathon not a sprint. Dr H believes that it will take about another 9-12 months just to get me functioning at about half my normal pre-Lyme capacity.

I will continue on the same IV meds and can expect to be on them for at least another 6 months.

We will also be moving forward with other aspects of treatment -

My endocrine system and adrenal glands have taken a pretty big hit. I need to have some testing done on these systems. As well, he has prescribed some meds to support and build up these systems.

I have a high level of inflammation and swelling in my joints, lymph glands and fascia. Dr H suspects that some of my joint and muscle pain, fatigue and brain fog can be attributed to a build up of toxins and dead Lyme bugs in my system. So he's prescribed several meds as well as some alternative therapies to help my body detox. He had started me on a fairly aggressive detoxing regime back in July however my body couldn't handle it so we had to stop. I will start on a gentler detox protocol and work towards getting back on the more aggressive meds down the road.

In about a month, we'll start specifically targeting my Bartonella co-infection by adding a 3rd abx to my ever increasing cocktail of meds.


So that is the game plan for the time being. I am to expect things to get really rough again as we slowly incorporate it. No pain, no gain. But obviously, the gain will be worth the pain. We talked quite a bit today about how scary it can be to start new meds knowing that they are going to initially make you sicker. In the last couple of weeks, I've been a whole lot more functional and so I am loathe to rock the boat. However, being 'functional' is still a far cry from being healthy and well.

My definition of what feeling 'good' means would make most folks skin crawl but when you have felt so very bad for so very long, you forget what 'good' is supposed to really feel like. Dr H encouraged me to add in the latest treatment protocols in slowly and keep pushing through. And eventually, I'll be working my treatment around my life as opposed to it being my life.



Both Graham and I were really encouraged by today's appointment. We fully understand that the treatment process is a long haul but we are confident that under Dr H's care I will eventually beat this insidious disease.

This evening I had another one of my gall bladder attacks. They are pretty painful to endure. It seems to have settled down now. However, I have Dr H's cell phone number and know that I would be in good hands should something happen down here. Of course, we'd rather not have a tour of the ER in an American hospital so we'd appreciate your prayers.

We are grateful that God led us to Dr H.

He's a super wise doctor with a super cool chair.

REDWOOD CITY - OUR HOME AWAY FROM HOME

We've arrived safe and sound in Redwood City, California.



We're back to see Dr H as I'm due for my next ''in office" visit. Both Graham and I are relieved to be here and excited to see Dr H and his receptionist extraordinaire, Anthony.

Redwood City sort of feels like our home away from home. Which is strange to say, given that this is only our second visit here however it is home to Dr H and his clinic. It is where I could finally be the patient and start my journey to wellness without fear of reprisal or discrimination.

And of course, it is a neat little town that is also home to the infamous Good Nite Inn.

What more could I want?

Well, for starters, Rm 124.

However, when we checked in today, they had messed up our reservation and Rm 124 was not available. I just about passed out cold because based on our last stay, I was quite sure that Rm 124 was the ONLY inhabitable room at the Good Nite Inn.

However, I stand corrected.
I can now happily confirm that there are 2 inhabitable rooms at the Good Nite Inn.
Rm 124 and Rm 242.
And wonder of wonders, Rm 242 is even a step up from Rm 124.
Complete with King size bed, a couch, a fridge and a vaulted ceiling.



We're living the good life for 50 bucks a nite.
Not bad, not bad at all.

Tomorrow I have my appointment with Dr H. Not sure what the rest of the week will hold but we're hoping we'll be able to get in a little visit with Marie and her dad, Jay.

But for the time being, I must rest. The trip took a lot out of me. The flight was hard on my old bod and I had a lot of trouble with my breathing during it. But I am happy and relieved to be here. We're missing the kids but we know that they are in good hands - my folks are 'grandparenting' for the first half of the week and then they will trade off their watch to Graham's mom.


P.S.
Peter - We are missing having you here with us - Mortimer is misbehaving and Lupe is nowhere to be found!