I'm Gonna Need A Bigger Pill Box

I can still remember when taking my One-A-Day Multivitamin felt like a huge burden that totally ruined the flow of my morning. For weeks, often months at a time, I would forget/ignore my vitamin and then I would go on a kick of taking it religiously until I would run out and then forget to buy more at the store.  I am sure all of you can relate to this drill. Now my mornings and evenings look like this…

 I miss the Multi.

I am going to assume that this photo has raised a few eyebrows and questions. Lucky for you I have set up a list of FAQs about my Lyme disease medication.

FAQs about Julie’s Lyme disease medication

1.       How long have you been on this medication?  November 25^th will be a year since I have been on the antibiotic/supplement combination. 

2.       How many pills are you taking on a daily basis, and why?

a.       I am currently on six antibiotics and 16 supplements, some twice daily and some daily. The dosages and frequency change often in an effort to outsmart the enemy.  Throughout the course of my treatment I have been on nine different antibiotics and at one point I was taking 21 supplements.

b.      The supplements offer support to my immune system, adrenal glands, liver  and everything between, as well as strengthen my body's ability to repair itself from the long-term problems associated with chronic Lyme disease.

3.       How much damage is all of this medication doing to your organs? I get blood work done every 8-10 weeks to monitor my liver and kidney function as well as other random tests. So far, knock on wood, no issues. 

4.       Are you experiencing any side effects from all of the medication?

a.       After 9.5 months of treatment my stomach started showing signs of distress. Some days are worse than others. Quite frankly I am surprised my stomach held out for so long. (Of course I have a supplement I am currently taking to help my stomach).

b.      Multiple antibiotics mixed with a dairy-free diet have led to the dreaded yeast issue. For the times when my daily dosages of probiotics are not enough, I have a prescription antibiotic to add to the mix.

c.       I started taking an antibiotic this past June which is primarily used to treat tuberculosis and it has turned my urine a very vibrant orange/red color. 

d.      The antibiotics are staining my teeth.

e.       I have a metallic taste in my mouth 

f.       There is one more side effect that was so grand, it will be showcased in its own post at a later date.

5.       When will you be finished with your treatment? As long as I am still exhibiting symptoms, I will be taking my antibiotics and supplements. My diet, which I discussed previously, along with yoga and acupuncture are key components to my treatment and will also be part of my post-antibiotic maintenance.

6.       Is this a normal chronic Lyme disease treatment? There is no cut and dry answer to this question so here is a multi-paragraph response. 

Previously I discussed the on-going chronic Lyme disease, testing and treatment debates; now it is time to discuss Lyme Literate Doctors (LLMD).  Many patient advocate groups in the Lyme community recommend seeking out physicians with specific experience treating the disease due to the fact that symptoms may mimic other illnesses and the standard blood test may produce false negatives.  A physician with the expertise to consider clinical symptoms in addition to blood tests may be preferable to one who relies solely on blood results. Many LLMDs will treat suspected chronic Lyme cases with antibiotics even in the absence of the early symptoms the CDC requires and will track a patient’s symptomatic response to antibiotics known to mitigate the disease. Long-term treatment with higher doses of antibiotics is the norm while getting treated for chronic Lyme by an LLMD. 

Due to the political controversy and legal challenges facing Lyme doctors, most of them prefer to keep a low profile, and for this reason can be difficult to find. Most accept new patients only by referral from one of the Lyme disease patient support associations or from other Lyme patients.

Early December 2011 I returned to the LLMD’s office to discuss the results of my blood work from a few weeks prior, and I learned that in addition to being treated for Lyme disease I was also going to begin treatment for three co-infections; two that I tested positive for and one that I tested negative for, but was exhibiting all the tell-tale symptoms of.

So back to that last question: Is this a normal chronic Lyme disease treatment? It is a treatment that my body is responding positively to while showing signs of improvement. Before visiting this doctor the only tickborne disease I had ever known about was Lyme disease, and now I am being treated for three additional ones. It has been eye opening to say the least. Since this time last year my overall health has improved and a handful of my original symptoms are gone. It has been a slow moving recovery and I still have a long way to go. 

Now here's a question for you. How much of my treatment do you think is covered by insurance?