November 16, 2009

112 PILLS...OY!

i had my monthly phone appointment with DR H today.

near the top of my list of things to discuss with him was my ever growing buffet of pills

i swallow 112 pills every day

i asked him if there was anything we could trim down...i can deal with gagging down 30 pills at a time but it's the cost that is getting pretty hard to swallow. only 4 of the prescribed pills are covered by insurance.

no can do
it's all needed
and DR H actually added 6 more pills to my regime today

it's overwhelming to swallow handful after handful of pills everyday but they are doing what they need to do and that makes it worth it. since starting this regime 8 weeks ago, there is no doubt that there has been an overall improvement in my health and quality of life.

DR H is pleased with how well my body handled my last 2 herxes. the oral meds i am on
(tinidazole and malarone) are pretty heavy hitters for fighting the babesia.

i am still not 'well enough' to go back on my IV drugs -

currently, my most troubling symptoms are daily headaches, night sweats, shortness of breath, full body neuropathy, losing balance, tremors and shaking chills. during an episode my body temp drops to 95.1F (it used to drop to 92.9F).

not being healthy enough to treat what is making me unhealthy is an oxymoron
it is frustrating and troubling

my body is not absorbing the oral amino acids i am on (my pink goo and green goo)
and my lab work reflects this
my AP enzyme that needs to raise in order to help my body eliminate the bacteria when the meds kill it off has not raised at all

today DR H talked about how it is most likely that i will need to undergo the amino acid IV therapy that is done through the doctor in Nevada (DR G). this is a cost and therapy we were really hoping to avoid.

i will have an in-office appointment with DR H in December when we bring Parker down to see him. if my labs and symptomology have not improved by then, we will need to move forward with that therapy.

as we were wrapping up today, DR H mentioned that he had seen the W5 report last night. He blustered on about how he couldn't believe the footage of his interview they chose to air.

He said he thought he looked like a serial killer.

that made me laugh so hard.
and as i snickered, i smugly thought to myself

'if you think that's bad, you probably don't want to see the picture i posted of you on my blog'

i've decided to fax him the picture tomorrow


both graham and i talked with DR H today about Parker. his western blot test is suspicious for lyme and it is absolutely necessary that he be evaluated in office. DR H is not jumping the gun, so to speak, on a diagnosis until he can give him a thorough evaluation. we do not want to be "lyme hysterical" but we are "lyme aware" and more and more it is looking like lyme is the culprit. at the same time, we are following through with what the doctors here are investigating. the rheumatologist that we saw at Children's Hospital last tuesday has ordered a bone scan to rule out bone cancer or tumor. parker's blood work is no longer suspicious for cancer (it was initially) but the doctor feels the scan is still necessary. we don't yet have a date but it should be sometime in the next 2 weeks.

parker is currently on the antibiotic amoxicillin. it is a highly effective antibiotic for treating lyme. he was initially placed on it because of his ongoing problem with a lung infection. DR H has asked that we keep him on it until his appointment on Dec 9. the risk of taking him off the abx IF this is lyme is far greater than keeping him on an abx unnecessarily for a few weeks.

he is also on a heavy duty anti-inflammatory and pain meds. they are not helping to manage his pain. (which is often the case with lyme pain) he was only able to attend school for 45 minutes today before he had to come home. in the mornings his joint pain is so severe that he is not able to climb up or down stairs. more and more often during the day he resorts to crawling in order to get around the house. this is incredibly difficult and painful to watch.

please continue to keep us in your prayers.


Renee said...

I can't imagine taking all those pills Shannon...wish I could as I think it would help! Glad to hear it is helping you and the oral abx too. It must be so hard to watch your precious son struggle with so much pain. I just want you to know you are all in my prayers.
God be with you and bring you healing~

Kara said...

What a terrific update! That's great news about your body handling the herxes better and little improvements here and there. So glad Dr H is there to help you through this. He is a hoot! I have 2 friends that see him and they love him.

Hope Parker starts seeing improvement soon as well. Any clue as to how long he may have been infected? If he does have tickborne infections that is.

That band 58 -- some LLMDs feel it is indicative of co-infections. Others don't know what to think. I think with band 30 showing up Lyme is most likely. So glad you know what to look for so he can start treatment right away.

I wrote an update on my status Sunday on our blog. It is amazing to me how Lyme can effect each of us so drastically different.

You all remain in my prayers. Have a good day! ~Kara

s. said...

Renee - i appreciate you and your faithful encouragement and prayers for me, even in the midst of your own difficult, painful journey.

Kara - i'm slow to move around blogs but i read your update today and am hoping to 'get to know you better' :)

yes, DR H is definately a character - graham and him can get completely carried away during appts...they end up ignoring me the patient!

thx for sharing that about band 58 - didn't know that - very interesting - IF we're dealing with TBIDs with Parker i strongly suspect a Bart infection.

IF we're dealing with TBIDs with Parker they are most likely congenital.

thx so much for taking the time to connect and encourage me.