What My Treatment Looks Like

I've had some friends ask about the treatment I'm currently using for Lyme.  Many Lymies are on 40+ pills a day - all staggered strategically to both maximize effectiveness and minimize cross-reactions.

As of today, my meds depend on the day.  On Day A I take one type of probiotic.  On Day B I take another.

• As soon as I wake up - take the thyroid medication.  I have to wait an hour after taking this before I can eat. 
• One hour later - take a multi-vitamin, something to help break down the biofilm, the chill pill, an immune booster/adrenal support and probiotic A (10 capsules in all) plus 5 drops of Vitamin D.  I also mix 3 homeopathic remedies into a tea and drink that.  They're supposed to help with pain/inflammation, adrenal support, and nervous system. If it's Day B then I take probiotic B, wait an hour and then take the rest of these items. I usually eat about this time, too. 
• If it's injection day I pull the solutions from the fridge.  
• 40 minutes later I heat up the hot pack and sit on it.
• 20 minutes later Mom & I do the injections.  She does the antibiotic and I do the vitamin. This is usually pretty close to two hours after taking the probiotic.
• At least two hours later I eat again then take the oral antibiotic.  Because I don't have a whole lot of energy throughout the day and I'm not able to eat much this second eating is usually dinner time.  The oral antibiotic must be taken about 2 hours outside of a multi-vitamin or the probiotic. 
• Two hours after that I take more multi-vitamin, the sleep aid, (4 capsules) and the homeopathic tea. 

I'm supposed to also be doing a smoothie on a daily basis that helps balance the GI (stomach).  I slacked off on it a couple of months back because it ended up being 32 ounces and the only thing I would eat throughout the day (that's a lot for me).  Plus the blender is WAY too loud.  The doctor's given me some ideas for alternatives which would still allow me to have the benefits of the smoothie without having to use the blender.  I need to get a few of the foods to go into it though. 

This is just the non-refrigerated stuff.  One of the prescription bottles is an antihistamine to take as needed and the long box is albuterol solution in case I have problems with my asthma and my inhaler is ineffective.  The rest is taken daily - some twice a day. 

Never apologize for showing feeling. When you do so, you apologize for the truth. ~ Benjamin Disraeli

Yikes! I didn't realize it had been so long since I last updated folks.

We had a pretty good visit with my LLND at the end of October.  By then the antibiotic injections weren't as uncomfortable and I discovered that if we do them in the morning and I go run a couple of errands it helps to loosen up the muscle and work the bug killers throughout my body - alleviating the discomfort I was feeling for days after the injections.

We had the results from the co-infections tests.  None of which were really surprising, given my symptoms.  Much of Lyme & co-infection diagnostics are done clinically (based on symptom patterns) rather than labratory (based on blood work, etc.).

She added Vitamin B12 and B3 (niacin) injections to my protocol, as well as a combination therapy (amino acids, herbs, vitamins, minerals, etc.) to help me sleep, an immune support, and an oral antibiotic to treat Bartonella.  The vitamins are injected twice a week, on the same day we do the antibiotics.  I had some friends ask about them so I decided to take a picture of the two injections and share it.  The top is the B-vitamins.  It stings horribly going in but I've found that if I slowly exhale while pushing, it isn't quite so bad.  The bottom is the antibiotic.  Yes, that's a big needle.  The paperclip is there for reference of size.

  

Up until this past Friday (more on that later) I had been feeling some improvement.  Still tire very easily but the pain seemed to have decreased and the rest of my symptoms were still in existence but had mellowed.  I was well enough to have lunch or coffee with some old friends from high school - some of whom I hadn't seen in 16 years!  If I could bottle up the healing powers of friendship and sell it as part of the treatment protocols for various illnesses, I'd be a wealthy woman.  I also met with a couple of fellow Lymies.  Time with those who have been there and done that - or in our case are here and doing it - is also very beneficial.  I was also able to read more, too.  Was almost feeling like my old self!  

But then I had a flare up.  I don't know if I did too much - was out for several hours 3 days in a row with various friends, if it was the full moon (many of us have noticed a pattern of our symptoms exacerbating during the full moon), if it was because I ran out of (and thereby was off) the aminos that help calm my nervous system (I didn't think they were that effective but apparently they are!), if I was in a herx or if it was because I ate french fries twice in 3 days.  Over the last few months I noticed that potatoes (yes, one of those few foods I could eat last winter) ramped up my pain levels.  I could eat sweet potatoes and yams without a problem but Idaho potatoes were a no-go.  I removed those from my diet and didn't think too much of it.  Oh boy do I now.  

Whatever it was started with a horrendous headache Friday morning and just progressed into pain levels in the 9 - 10 range .  Saturday was the absolute worst day since I began treatment.  The crackles of the fire place, the door to the microwave closing, the sound of someone walking too heavily, and other seemingly benign sounds darn near pushed me over the edge.  It isn't just that the sounds hurt my ears.  It's waves of pain that go through my ears, into my head and travel all down the body.  When I was trying to think of how to describe it the only thing I could come up with is standing beside a piccolo pete as it goes off while someone drags their nails down a chalkboard and hits you with a baseball.  Not a pleasant image, I know.  

Here it is, the Tuesday after the flare up.  Dad & I chained up and made it down to my regularly scheduled LLND appointment yesterday.  We had 4 inches of snow here.  She's not really sure what caused the flare-up either but it could very well be a combination of the above mentioned triggers.  We refilled my chill pills (nerve calming aminos) and believe you me, I cracked that bottle open and swallowed two of those puppies as soon as she gave it to me.  I'm still sensitive, still in quite a bit of pain but I'm no longer feeling like I may need to be completely sedated until this latest flare-up passes; which I was seriously considering on Saturday.  Yes, I was tempted to break my 'no hospital' rule.  The one thing that prevented me from doing so is the belief that the docs there would more than likely discontinue my Lyme treatment and I'd just fall further behind and end up worse. 
 
We decided to continue my current antibiotic regime for another month (December 2nd was supposed to be my last day of this round of the injections).  Which I'm fine with given the alternatives - more orals or dealing with a PICC line or port. 

Many people have a hard time understanding the lives those of us with a chronic illness are living.  Christine Miserandino wrote a piece that explains it quite well.  Please read her Spoon Theory.  It's only a couple of pages and is an easy read.  It takes less than a spoon to read ;).

There still isn't anything that most folks can do for me.  Prayer is always helpful.  Another helpful thing is educating yourself on prevention, treatment guidelines, and what living life in the Lyme-light is like.  Check Under Our Skin's screenings page for a screening near you.  If there isn't a screening listed, you can host one!  If you live in my area, hang tight because we're actually planning one for mid-January/early February! Edit: You can also view the film on Amazon.com

Until the next update: Please be safe while celebrating this holiday season.  If you drink, don't drive.  If you drive, don't drink.  Remember (and use) safe food-handling practices.  Wash  your hands and gargle often to prevent the flu bugs.  Make sure your smoke detectors have live batteries.  Embrace the therapeutic aspects of cooking from scratch - it'll give your kidneys and liver a break from processing the junk that's in the packaged foods!