Sample Day

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24 hours into week #4 and I’m back to feeling like shit. The second antibiotic dose yesterday hit me hard. Thankfully Kaitlin went to bed easily and I was able to crash on the couch and fight off waves of nausea while sipping on Ginger Ale.
Here’s an idea of what I took yesterday:
Basic Nutrient Multivitamin – 6 total (3 AM and 3 in PM)
Kyo-Chlorella – 6 total – this is to bind toxins
ALAmax – 2 total – support livery and kidneys
Floramend – 1 – probiotic
Deplin – 1 daily – heal nerves
ProOmega with GLA – 2 daily
Low Dose Naltrexone – 2 night
Omnicef – 4 daily (antibiotic)
Minocycline – 2 daily (antibiotic)
Septra – 3 daily (antibiotic)

The beginning of week #4

Oh how I enjoyed the week break of meds last week. Funny thing about Lyme is even when you are on a “break” week, there are still 25 (+) pills you take daily. The only thing missing is the big nasty stuff – the antibiotics – which just push you over the edge of feeling like total hell.

I was able to regain my appetite last week (somewhat) which was nice. I don’t feel like I’ve enjoyed a full meal since starting this process. It was nice to actually eat something and not have the smell or taste of it make me vomit.

I’ve already had to put in refills for most all of my supplements and antibiotics. I think, in just 4 weeks, I’m getting close to the $1,000 mark with meds cost. That’s including what is actually covered by my fairly decent health insurance plan. I can’t imagine what it would be like if I was paying out of pocket for each and every little thing. I was able to find a mail-order supplier for the Deplin which was ungodly expensive at Target. The new cost is for a 90 day supply and it’s down to $200.00. Let’s just hope this place is quick to ship. The compounding pharmacy that makes my low-dose Naltrexone is closed during the week of Christmas and so I went ahead and put in a refill for that too – which is another $75.00. Ugh. This just keeps adding up. Things are tight around here, so I’m just piling on the expenses on a credit card (something we never do here) and will figure out how to pay it off soon.

Speaking of which, I have some absolutely amazing friends that I met on IVillage during my infertility journey that have been so incredibly supportive during this new and difficult journey. One of my friends sent me this lovely bracelet and keychain that says “Strength” for Lyme Disease Awareness and Support.

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Then, today as I was about to post this blog post, a huge box arrived from Omaha Steaks filled with food along with chocolate and books. It was so incredibly sweet.

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I’m so lucky to have such an incredible support system with these ladies. Honestly, they’re more of a support than any of my “real” friends have ever been. We’ve all been through so much, and I don’t know what I would do without them.

Week #3

Yesterday marked the beginning of Lyme Treatment Week #3. This week is supposedly a “rest” week from antibiotics – which essentially means I still take 25 pills a day, but just none of the hard core shit. Funnily enough, the vitamins and assorted “healing” meds still make me feel awful and strip away my appetite.

Last week was hard. I added in a new antibiotic – Flagyl – on Thursday and Friday and it was a really hard one on me. I had Friday off work and I slept for 4 hours straight – my body felt like it was slushing through mud to just move.

By Saturday I was starting to feel human again, so I did something I probably shouldn’t have done – I skipped my vitamins. And low and behold, I felt awesome with nothing slushing around in my stomach. So when I woke up on Sunday morning to run my pre-Lyme Diagnosis 5K, I skipped the vitamins again. Wow – what a big difference in my appetite.

Speaking of appetite, I have lost all attraction to food. My LLMD suggested a clay shake and affiliated stuff to drink that would supposedly help with digestion. I haven’t ordered any of the stuff because I can’t find it anywhere, but I do hope to do it soon.

My plan next week is to head back to my LLMD on Friday for an IV Dose of the Myers Cocktail so that I can have some energy and nutrients to hopefully feel better during an antibiotic week.

My memory still hasn’t returned. My body is adjusting to these meds and doing weird things. Today when Matt and I were walking out of a restaurant, my right leg just gave away and I fell flat on my ass in the middle of the floor. Matt said it was “the weirdest thing he’s ever seen” which didn’t make me feel good about the situation. But honestly, I’m trying to continue to exercise when I can, so I can maintain my sanity and get this awful weight off my ass.

So there you have it – a very boring week #3 update.

 

My Lyme PSA

I haven’t been as “out” about my Lyme Diagnosis as I was when I was diagnosed with Infertility. I think I’m just tired of announcing to the world that I am a chronically ill person and then having to explain another misunderstood diagnosis to someone who’s going to ask stupid questions.

I realize that this is an incredibly selfish attitude to have – but I’m tired. Tired of being a patient advocate. I’ve been doing this in one way or another for over 5 years and I just don’t have it in me anymore.

Here’s a good example of why I don’t tell people I have Lyme. Because every stinking person I’ve told has made the same comment when they hear about antibiotic treatment. Each person says “oh, I hope you are taking good probiotics!”
I’m soooooooooo glad everyone is so damn concerned about the state of my digestive system.
I’m a pretty uptight person when it comes to bathroom habits so this is doubly irritating for me.

So here is my PSA – if you meet someone with Lyme – don’t fucking ask about their probiotic use. I can assure you it’s being addressed by the physician that is prescribing mega doses of medications.

Beginning Week #2

So tonight will be the 7th day of this first full week of treatment. There have been good and bad days. I’m already exhausted of taking 30-40 pills a day. The low dose naltrexate was the hardest thing to adjust to – which is weird because it supposedly has like zero side effects. Just goes to show you that everyone is different.

This week will be the same dosage as last except I’m adding a new antibiotic to the mix on Thursday and Friday – Flagyl, it’s supposedly the “cyst buster” antibiotic. I think it supposedly sucks pretty bad, so not looking forward to it.

I just tallied my my expenses so that we could get a handle on this shit.
My last appointment was $180 and I paid $480 for supplements and meds that we’re not covered by insurance. After filling my week 2 med boxes I already see that I need to put in another refill for 4 of the meds which is an additional $210.

Here’s a peek at week #2 med box.

Bottoms up.

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Lyme Treatment Day 1

Day 1.

Lyme 2

Yesterday was the first day of my Lyme Disease treatment. After my appointment last Thursday, I prepared the huge list of medicines and organized the 30 pills that I have to take daily into little boxes.

In hindsight, I should have probably written this post BEFORE day 1, because now, being 24 hours in, I am a jittery anxious mess. My assumption is that it’s just my body getting used to the heavy dose of antibiotics and neurological drugs that are coursing through my system.

My LLMD (Lyme MD) – told me that weeks 5-7 would be the worst, so I had no expectations that I would feel like this so early. Honestly, I feel like a big ass wimp.

My thoughts are all scattered, I spent the whole night gritting my teeth and dreaming off and on about dinosaurs with no skin, just bones.

I think the drug that is making me feel this way is the Low Dose Naltrexone.

We will see. Let’s pray that the rest of this week gets better as I adjust. I am so grateful I have this week off work.

 

 

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LLMD appointment tomorrow

Tomorrow is my long awaited next steps appointment for the treatment of my Lyme. It was originally scheduled for December, but things got mixed up with work, so now I get answers sooner.

I can’t even begin to explain the swell of emotions that are accompanying this appointment. I know that logically, tomorrow I will find out the plan to make me feel better. But I’m scared of the treatment. I’m scared because I’ve read the hell that so many Lyme patients describe from antibiotic treatments that can last years. I’m scared because I don’t want a PICC line or a Port to pump high doses of medicine in my body.

Matt is going to take the day off tomorrow and drive the 2 hours northwest with me to my appointment. Last time I was so overwhelmed with all of the information, I wished I would have had someone else there to help me remember everything.

All of my lab tests have come back and we will review everything in detail. Here are some of my specifics:

C4a – 9690 ng/dl (range 0-2830)

CD57 Lymphs – 44 (range 60-360)

EBV AB IG Р2.76  Index (<=.90)

DNase-B Antibody – 531 u/mL (<301)

Human Trans Growth Fact. beta 1 (TGF -b1) – 3500 (range 344-2382)

Thyrogloublin, Antibody – 7.0 ( range 0.0 – 0.9) – helllllooooo Hashimotos

Thyroid Peroxidase (TPO) – 362 (range 0-34) Thyroid disease, anybody/?!?!

Alkaline Phosphatase Р134 (range 42-107)

 

Mainly, all the labs above will be the key markers that we discuss for whatever lyme strain I have been infected with.

 

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