Lyme Update

This is a long overdue update, and for that I apologize. I’ll try to make this as comprehensive but brief as possible as I know some of you are curious as to what is going on.

For starters, Friday is my last day at my current job. I know many of you that are reading this don’t know this news and will likely be surprised. I’m surprised too, but it’s a decision that had to be made. Non-profit gigs do not pay well, at all. And with a disease like Lyme, which is a costly disease to treat and manage, I had to make some very difficult decisions about my employment. Early in January I officially turned in my 4 week notice and as of next week, I’ll be back in Medical Device Sales. This move will allow me additional financial opportunities to fund the growing expense of my treatment. 

Some have questioned my decision to move on. All I can say is that when you are facing 2(+) years of treatment that isn’t covered by insurance with nearly a $40K price-tag, you have to do things you don’t want.

With regards to the Lyme, I’m still on-hold from antibiotics. My taste hasn’t come back and although I’ve been able to gradually increase my caloric intake from 600 calories a day to almost 1,200, I’m still lacking in some of the basic nutritional categories. Protein still remains a struggle and for that, I’ve turned to juicing to help out. I’m now averaging 1-2 homemade juice drinks a day, made from fresh organic produce. I try to get 2/3 veggies and fruits in each drink, which helps with rounding out my diet. Otherwise, white rice is still a big favorite in my diet.

On the appointment front, I finally have a Dr.’s appointment with the University of Pennsylvania Sm.ell and Tas.te Disorders Clinic the first week of March. I’m hoping that this appointment will help determine what went wrong with my senses.

Otherwise, I’m still trucking along over here. No significant improvement or deterioration. Just hanging on.

 

So my nervous system is shot

Goddamn it.

I’m so done with this disease. I’m over treating it. I’m just pissed the fuck off right now.

I finally was able to speak to my Lyme Dr. today after waiting 23 days to talk. I told him about my lack of eating due to taste (300 calories yesterday) and how bad I’ve been feeling because I have no energy left, and he is ceasing all treatment. It’s his opinion that the Lyme is attacking my central nervous system and therefore causing my body to go into “freakout” mode. The nerves that tell my brain to eat and taste are being impacted by the die off of the Lyme from the antibiotics. Die off is a good thing, except when it reacts in this way. Which is just perfect. Right?!?

So the next step is to stop all antibiotics and immediately begin Neurotin – a new and super fun drug (grrrrr) that will hopefully allow my central nervous system to repair itself and get back to normal.

Will I ever eat again? I don’t know. My LLMD doesn’t seem to know. All we both know is that for now I can’t live off of 300 calories a day and there’s no way I will get better on this path.

So yep, pulling the plug on the past 7 weeks of treatment.

I am over this. This is the most upsetting and frustrating disease I’ve ever heard of. There are so few Dr.’s that treat patients, the treatments are all nutty, and I’m just over this.  I want my life back. I want to eat and I want to be done with this.

I’m a mess

The title says it all.
I’m a mess. A tea-total mess. I hurt all over. I’m exhausted to the point of no return, and I’m starving to death.

My average daily caloric intake is around 600 calories per day. I can’t eat because for 21 days and counting, I haven’t been able to taste food. 

My break week from meds didn’t seem like much of a break. I managed to get up to my LLMD’s office last week to get a Meyers Cocktail IV which helped for about a day. Then back into the abyss.

I’m so sick of being sick and complaining. I hate myself right now.

I just want my life back.

 

Hell Week

A-MEN!

It’s a rest week from antibiotics. The last 11 days (which, coincidentally were during the week of Christmas) were pure fucking hell.

Pure hell.

I was warned that week #5 was going to suck and boy oh boy, it sucked in royal fashion. I wanted to blog about how bad it was, but it was just easier to lay on the couch and moan to myself about how much I wanted to die. It was particularly upsetting since last week I had the week off work and I was hoping to spend some quality time with my kid. Instead, I spent my week sipping lemon water and hoping that my kid will one day forgive me for being the shittiest parent on the planet.

The level of exhaustion my body felt – it was unlike anything I’ve ever had to endure in my whole life. It’s truly indescribable.

But the very worst thing that happened during this 2 week antibiotic cycle was that I lost my sense of taste.

Yes. You’ve read that right. I have completely lost my ability to taste food. If you follow me on twitter (@raisingmavis) then I apologize for my incessant bitching about this.

The loss of taste was “fun” for the first 6 hours and then it just started to get scary and upsetting. Not to mention the fact that it happened the Friday before Christmas so I couldn’t taste any of the food I was responsible for preparing for Christmas Eve and Christmas Day, which was sad. Each and every thing I put in my mouth tastes like sand or dirt. I’m basically surviving off white rice and chicken broth. It’s like I’m living inside my own episode of Survivor over here. The end result: I have lost a total of 12 lbs.

However, it’s not very advisable to take copious amounts of antibiotics with nothing in your stomach. Just saying.

Right now I’m waiting (5 (+) hours…. but who’s counting?) for my LLMD to call me back (his office has been closed since this particular new level of hell started) and tell me what in the fuck is causing this new symptom. I can only figure it’s one of 3 things: Bells Palsy, an unfortunate antibiotic side effect or a Herx from the Lyme leaving my body.

Happily, this morning I woke up feeling 100,000 times better energy wise. Still no sense of taste, but I could at least manage a smile. Ha. That level of energy and happiness was quickly used up after I decided to go on a laundry and cleaning spree. End result: I landed my ass in bed for a 4 hour nap. So there you have it.

 

 

Med Box on Christmas Day

Over 50 pills. I haven’t even started yet because I’m so scared at how I’m going to feel.
Merry Christmas.

Week 5 of Lyme Treatment

Today I began Week #5 of my Lyme treatment journey. Week #5 mirrors week #3 – for a total of 4 antibiotics. I hate this week. I really dislike Flagyl – it makes me so dizzy and nauseous.

I took my first Lyme detox bath on Friday night and I’m hesitant to ever do another. It was 2 cups of Epsom Salt and 2 cups of baking soda. I had no idea that I would taste the salt in my moth 4 days later! It’s disgusting and awful. My appetite already sucks but I have to choke down food to take some of these meds. But when you add a salty mouth to the mix it’s nearly impossible to eat anything!!!! I really wish some of the Lyme blogs I read would have mentioned this possible side effect of the baths so that’s why I’m writing about it. I didn’t feel like the benefit of the bath outweighed the salt mouth that is still ongoing.

This week is supposed to be the HARD week of treatment, according to my LLMD. I guess it’s a good thing I’m off all week for Christmas but I’m not looking to feeling like crap.

Sorry for the Debbie downer post – just in a icky place tonight.

December Lyme Expense Totals

I want to keep a running list of my Lyme related expenses that are not covered under insurance.
The costs are piling up fast, and we are having to make some tough choices on how we are going to afford this treatment for the next 12 months. This monthly cost will actually increase by $200 in January for 2 IVs so I will be looking at approximately $1,600 in out of pocket expenses in one month. Oh! And don’t forget that my deductible resets on 1/1/14 so that’s another $500!
It enrages me that my insurance doesn’t cover the majority of my expenses.

December 2013

Drs Visits: $480
Meds: $821
Supplies: $85
Total – $1,386

Sample Day

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.

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.

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.