"Better out than in," as Hagrid would say...

Today's post is less wit and wisdom, and more whining. Better out than in. The latest news is annoying, with a sprinkling of hope and faery dust.

First, let me say that the trip to Madison, WI was delightful. Erin and Phil, my hosts, made a most comfortable landing space for me, including a tempurpedic mattress in the guest room, lovely dogs, great food, and fabulous company.  Erin took me on a little tour to see the house we lived in when I was born and to see Willow Island downtown. Phil drove me to my appointment with Robin DiPasquale, ND of Madison, WI, and she is AWESOME!!  I loved her instantly. She has a private practice and also works through the University of Wisconsin. During my appointment with her, I felt seen and heard without judgment. I realized afterwards that I wear my virtual armor whenever I talk about this disease, whether I'm talking to a doctor, friend or other. I think this is one of the worst things to deal with for people with TBDs and other invisible illnesses. It takes an energetic toll.

When I am exhausted and in pain, my emotional state is squishy at best. My normal, grounded, rational self is either hiding or asleep and the tiniest things can set off Penelope (my inner drama llama - that's another story, but you get the idea.) I'm more easily distressed, sensitive and prone to worry. Fragile. 

Add to that, three strange and annoying things people seem compelled to do that require an extra layer of tough to handle.

       1.  Unsolicited advice, especially about my spiritual process or ways of thinking
       2.  Unsolicited help, and I'm referring to the somewhat forceful kind from the people who think their brand of healing is just what I need and hound me for a chance to prove themselves or sell me something
       3.  Judgment and criticism, about my choices, my spiritual condition, my partner's support, my treatments, and the saddest of all, my overall character and quality of my marriage (a recent example: I'm exaggerating my symptoms so I can take advantage of my partner, and he's being codependent by letting me do so.)

This is exhausting in a whole new dimension and one I wouldn't wish on anyone. I must have wonderful boundaries and the energy to enforce them to keep myself whole. When I can't do that, when I simply don't have the energy, my back up plan is to isolate or limit my contact to people that understand my condition and my definition of support. 

And now, for my last whine of this post I'll write about my growing medication frustrations. I returned from Madison, WI with a new regime of supplements, liver cleansing and toning herbs, homeopathic medicines and gemmotherapy extracts. I started all of these and found my symptoms exacerbated. My belief is that Robin's protocol made my digestion much more efficient (that was her primary focus for our first session - restoring my guts and getting me off Zantac and eventually Dexilant) thereby making the antibiotics and antiparasitcs more effective, thereby creating a herxheimer's or die-off of the bacteria; a good thing.  

I had an appointment with my infectious disease doctor in Maryland shortly afterwards and he changed all of my prescriptions which was quite frustrating since Robin's protocol considered my current drug regime and these were very different drugs.

I started the new prescriptions. Two things went horribly wrong! My doctor thought that since I had been on Dexilant and Zantac for awhile (to stop my nausea and acid reflux) that I might be able to handle Zithromax. That's the stuff that landed me in the ER last August. He was wrong. I was horrifically sick to my stomach in no time. Now the second thing that went wrong was grossly compounded by the first and made my life a living hell for two days.  One of the drugs he prescribed had negative interactions with four (yes, I said FOUR!) of the symptom management drugs I take. I found this out on line after I took the first dose and was deathly ill, knowing something wasn't right. Rifampin, one of the new drugs, wiped out the effects of all of my symptom management drugs and added stabbing intestinal pains, light sensitivity and headaches - on top of all the other symptoms I was suffering from in that moment. This was bad, very bad. I cried a lot and laid around in the dark moaning for two days. Not pretty.

I stopped taking his drugs and stayed on Robin's protocol. I have felt surprisingly bad but I realized yesterday I had added in teasel, so I stopped that and am feeling better.  Tomorrow, I see my doctor in Maryland again, and in an attempt to learn from my mistakes, I'll wait until after this appointment to make a follow up appointment with Robin. That seems like the way to go. I want her to have all the current information.

OK, I think I'm done whining for now. I hope things go well today. I'm feeling frustrated, overwhelmed and a bit anxious. I'm considering looking for another doctor closer to home that follows the ILADS guidelines. I have a lead on a woman in Lexington and might look into that. I just don't know what to do and sadly, no one else really knows either. We're all guessing.

Go, Virginia!!

I just came upon this website and am totally dazzled by the resources and content.  Impressive!  http://www.virginialyme.org/

I was also surprised and delighted that the Governor of Virginia organized a task force to study Lyme.  They held forums for patients and providers, both.  (I don't know how I missed out on that one!) Here's a link to the findings and recommendations. It's a step in the right direction, but we still have a long way to go.

Virginia Task Force Report

Holy horse pill, Bat Girl!

These new antibiotics are the biggest pills I’ve ever seen that are supposed to be swallowed whole.  Seriously??  Check this out!  They're huge!  

I've had the prescription for a few days now, but have been unwilling to take them until after the weekend.  If they work, I'll likely feel awful.  If they don't work, I'll likely feel awful.  You can imagine my resistance, I'm sure.  I have a 3 week trip away from home planned that starts mid-month and ends in December after my appointment with the naturopathic doctor in WI. Increasing my medications is a scary undertaking right now. 

In other news, I've finally crumbled under the pain and the pressure to manage it, so I've made an appointment with the UVA Pain Management Clinic next week.  I'm looking forward to seeing some experts about my protocol since this will likely be a long haul. My health care really is becoming a full-time job.

Stay tuned for the conversation with the doctor that denied me care last spring.  Someone in his office called on Friday to say he wants to talk to me in light of the test results I sent to him.  I'm taking pro-action, one doctor at a time.

Dr. Jemsek at ILADS 2012

This video is worth taking the time to watch if you are a healthcare provider or seeking treatment and information. Dr. Jemsek is a delightful and informed speaker.  This is a teaser trailer for a purchasable video, but is still full of good information and validation.

Dr. Jemsek at the 2012 ILADS Conference  

The IDSA guidelines seriously need to be thrown out!

I am very grateful for the thoughtful research and digestible layout that LymeDisease.org published regarding why we protest the IDSA guidelines for diagnosing and treating Lyme Disease.  And those clever boots included a link to sign the petition to have these guidelines thrown out. This rocks!!  Please, if you haven't already signed the petition, do it now!

LymeDisease.org Protest Rally - Why we protest against the IDSA

Strange days, indeed

It is very strange that a confirmed diagnosis of an awful disease could bring me relief, but it has. I feel like it's my "See I'm Not Crazy" certificate.  What a tragic commentary on our current health care marketplace and the continuing downward spiral of medical ethics in the U.S. This is sickening, but I'll not go into a full rant now.

Silver Lining: I called the infectious disease doctor that denied me care three times this spring because he didn't get positive test results. I had his cell phone number from years ago and he answered when I called.  I was stunned for a second, but quickly got it together and explained that I had in my hands a CDC-worthy positive blood test for a current or new infection of Lyme from Stony Brook University's Lyme Disease Research Lab and challenged him to re-think his protocol. He was actually pretty cool about it, but in response to my statement about getting treatment, he asked with a little sneer in his voice "yeah, but are you getting better?"  Irksome man.  I said I wasn't getting better yet, but I stopped getting horrifically worse.  He softly repeated what I said as if considering it seriously and then became quite inquisitive. I asked if I could send him a copy of the test results and he said he would love to see them and compare them to what he had. 

The first time I saw this doctor was in 2002.  He didn't believe I still had Lyme then either.  I had been on oral antibiotics for 2 1/2 years and he was very stubborn about it all, but I was more so.  I kept showing up, pleading my case, refusing to be silenced or go away, and he finally gave me the PICC line (IV antibiotics) in 2003 that changed my life for the better.  I also remember that he was horrified when I had a herx from the first dose and felt like I was going to die, and that he backed off the dose and worked me back up to the full amount. Somehow, I expected that we had worked through all of this and it would be different this time, but it was awful when I went to see him in March of this year. He denied my reality over and over again.  I went to his office 3 times for various tests and consultations. I felt like I had to bring this back to him, not just to say "I told you so" but to pave the way for better care and attention to the people that come to him after me. It's a very small piece of activism, but important to me.  I will admit that I was shaking with adrenaline when I hung up, but don't think it showed in my voice.

I am so very grateful to my doctor in MD who started treating me immediately based on my symptoms and medical history, and I am more grateful than I can ever say to Karen for sharing her resources with me and to Janice for bending the rules for me.

And now the big news, which I'm tucking away down here at the bottom of a long post, because it's a tough one to admit and perhaps fewer readers will make it this far. Yes, I know the reasoning is silly, but it's my brain. I filed for disability days before I got my test results.  I am prepared for a long haul but pray for FEGG - fast, easy, gentle, graceful. I am unable to work reliably, even for the simplest tasks like dishes and laundry. Crow has been picking up more and more of the slack at home - like I haven't been able to mow the lawn in over a year now - and we're losing about $1000 a month. This feels like the responsible thing to do and I hope the impact on my mind and health will be manageable with good friends and therapists.

Hopefully, this piece of paper will help soothe the minds and erase any vestiges of doubt from my healthcare providers and help them focus on the best possible treatment for me.  More tests for co-infections will start next month.

Just when I thought it was safe to get off the couch...WHAM!

The Herxheimer Reaction (known to the in-fected crowd as a herx) knocked me back to the couch.  Who knew that gravity could be painful, oppressive and immobilizing?  That's just weird. 

After 3 days of herxing and frustrating mobility issues (like not being able to walk long enough to grocery shop) I caved in and ordered a cane with a folding seat. It's made of birchwood and looks well made. Check it out!