Another month has rolled by with continued nausea and without antibiotics and no usable help from the Lyme doc in Maryland. When I told him about my double ER trip last month, my concerns about my symptom exacerbation and continued nausea, he mumbled "Well, you have to take the antibiotics!" then later in the conversation: "Well, see a GI specialist then" which if I took that advice, would be another couple of months without antibiotics to get a referral from my PC and get on the wait list for a specialist. Not an acceptable solution. The last 2 weeks I have hit levels of unmanageable pain and unbearable fatigue generously slathered with weird neurological symptoms, night sweats, and stabbing pains in my head. Staying off antibiotics isn't an option unless something else can stop this runaway train.
So what's a tick bit chick to do? Well, since my guess seems to be as good as anyone else, I first went to the pharmacy and chatted with Tom. He's my pharmacist and I just love the guy. I told him that I was pretty sure I had become sensitive to taking Dexilant (an antacid that I take first thing in the morning) on an empty stomach and that it was the current culprit in triggering my morning nausea. Warnings on the bottle said not to chew or crush but also said it could be sprinkled on food which is confusing, eh? Tom tells me that it's the pellets on the inside of the capsule that need to stay intact and I could try sprinkling the pellets into yogurt or something. I asked if I could just pop the pellets in a bit of water and he said no problem there. Today was the first time with this approach and it's too soon to tell (I took Zofran, just in case) but I think this is good.
The next thing I've done is contacted my amazing Naturopath in Wisconsin and reordered all the digestive healing aids she prescribes - digestive bitters, Rhizonate, probiotics, and digestive enzymes. I had forgone them the past few months hoping I could get away without the expense, but at this point I don't see another reasonable choice. We had our 2012 taxes done and spent over $11,000 in medical expenses. We surely can't keep that up, but at least we got the write-off.
So my current plan, god-willin'-and-the-bile-don't-rise, is to start all the happy tummy supplements for a week and slowly reintroduce the 3 different antibiotics and antimicrobial drugs. Perhaps a slow intro will also reduce the chances of a horrendous herx when the first die-off hits.
Speaking of which, I took a bath last week. It wasn't a hot bath, it was comfortably warm and relaxing. However, about 30 minutes afterwards I was writhing in the worst joint and nerve pain yet and the 30 mg oxycodone wasn't touching it. This lasted for 6 solid hours and was exhausting. I googled it the next day and sure enough, too much heat can cause the bacteria to die, creating the herx. Geez. That's just mean, if you ask me.
Also, I stumbled across an online interview with a Lyme doctor who is about 30 minutes away, as opposed to 3 hours away from my current doc. She sounds pretty amazing and like she uses a combination of western medicine and diet/exercise regime that she has tailored for Lyme patients. I'm seeing her next month. I'm not sure I will transition to her care, but I feel obligated to seek the best and most sustainable care that I can. She takes insurance, too. Whew! That's one less nightmare.
When I called her office, her assistant said she wasn't taking any new primary care patients and I followed my intuition and asked "Well, what about new Lyme patients?" and got an appointment. YES!! One must know the secret handshake in the messed up medical system.
Finally, I've done a little more reading up on the RIFE machines and I think that's the route I'd like to take in conjunction with my standard care. These things sound pretty amazing or like snake oil depending on my mood, and I have been offered free use of 2 of them - one in Lexington and one in Afton - from people who claim to have either cured themselves or are finally being cured by these. It makes sense to me. The next time I have $2,000 to spare, I'm getting one. I've actually thought about doing a fundraiser for one, but can't quite wrangle that for myself. Maybe I'll ask for help.
Grateful for my life, friends, therapist, health care team, family, and sense of humor - and wildly committed to my optimism and healing. Thanks for reading!
