The first thing Lyme disease does to you is take away your power. I'm taking it back.
Lyme Warrior -- Yoga Every Damn Day --- Lyme Disease Awareness Month -- Take a Bite out of Lyme Challenge
Fact: There is no place in the body that the pathogen causing Lyme disease cannot live and damage. It can be in the muscles, joints, kidneys, liver, endocrine glands, GI, heart, lungs, central and peripheral nervous system and even the brain. This kind of unending pain and torture can make you feel powerless.
The above shot and caption was my last post for Lyme Disease Awareness Month on Social Media and for the Lyme Disease Challenge. I'll be posting a re-cap of all that info later but here's where I'm at in my own Lyme disease treatment progress. Mr. Wild Dingo did the photo shoot for me because I couldn't shoot and wiggle into a yoga pose quickly enough, so here are a few funny outtakes as well.
I've been making HUGE gains in early May, with a change to a Paleo diet plus weekly infrared sauna sweating, I nearly eliminated all my joint and connective tissue pain. But I had a huge Neuro-Lyme set back late May. The symptoms started quite sneakily at first, with phantom smells, random clumsiness, insomnia, tinnitus, memory loss, brain fog, spaciness and light headaches in the evening. It then bloomed into full on blinding migraines. One night was so terrifying, if I hadn't known that I have Lyme disease I would have gone to the ER. But with immune deficiency, the ER is the last place on the planet I should be, so I waited it out, fell asleep at 4 a.m. and called my doctor.
She promptly put me back on Bicillin shots and within 24 hours my headache was gone but all my joint tissue pain was back!
Now you may think: "Awe damn!" But this is great news. I was able to connect the dots. My joint/tissue pain is NOT pathogen, but toxin from dead pathogen or the drug itself. It means I have some relative control over the amount of tissue pain I have to endure to continue treatment.
I can't go anywhere without these two. Loki insisted on being on my mat. The lighting is horrid. I look like a certain orange presidential candidate. Nothing I could do to fix the bad lighting.
I saw my doctor the next week. And though it seems like a huge set back, when you live in a body ravaged by pathogens that thrived for 8 years, you know all the symptoms and side effects of treatment. You begin to really understand just exactly what symptom is caused by what pathogen or toxic die off. The migraines and neurological symptoms were definitely pathogen, not toxin-related, as my body felt great for once. But it was a new type of pain in my head. My old migraines felt like ice picks in my forehead. This new pain was more top of the head feeling of exploding and tons of pressure. I couldn't move my body for hours otherwise I really felt my head would explode.
That helped a lot in narrowing down what it could be and it turns out that this is definitely not so much Lyme or even Babesia but more Bartonella. In the back of my mind, I always felt we didn't go after the Bartonella hard enough. So it will be 3 weeks of a new IV drug that targets Lyme and Bartonella. This makes this drug #44 in the grand tally of drugs that I've taken. But who's counting?
By now I'm really familiar with the Lyme drill: kill the pathogen, fill your body with toxins from die off and the toxin of the drug itself, feel like shit until you detox all the toxins. I have a bunch of detox protocols on hand such as Alka Seltzer Gold + liposomal glutathione, all my detox supplements for the liver, gall bladder and kidneys and a weekly infrared sauna sweat. If those don't work, I'll shoot for adding in IV glutathione. Because there's just no point to making myself feel too much worse if I don't have to and after 3 years, I know how my body detoxes and what works. That's the journey every Lyme disease victim faces. It's an unraveling puzzle of what's causing the pain (pathogen or toxin) and how to re-balance the body into homeostasis.
Seriously Internet. I feel really confident. It sucks to stay on drugs but I'd rather be where I'm at than where I was in 2010 full of pain with no hope, no knowledge and no power. I'm taking back my power! You just wait and see!
You are just amazing - we so admire your perseverance. We will keep those prayers and good thoughts going in the hope they may help a little too.
Woos - Ciara and Lightning and Mom
Keep at it!
It appears that within all of the short-term setbacks you are making great progress..
Hopefully you have more that eight blog readers (surely Juno and Loki have more than eight fans)!
I have circulated several of your key "lyme sucks" summary posts (cataloging treatment to date. symptoms, etc.) to friends and relatives to hammer them on how serious lyme+ can be and to provide some insight into my wife's struggle. Close friends who have watched my wife's very slow progress are now terrified of ticks, but even though Mid-coast Maine is a lyme+ hot bed I still find that nearly everyone who has not had a lyme-stricken close relative or friend remains largely clueless about how serious these infections are.
And most local MD's are still largely clueless and at best will prescribe three weeks of doxycycline after being pushed by a tick-bite patient. We do have several very lyme+ experienced local doctors (mostly NDs and DOs) - but a recent trend is for them to not take on new lyme+ patients so they can retain some non-lyme practice.
We recently bought a SaunaSpace NIR sauna which is (along I think w/CBD oil) driving the first major recovery (very far yet still to go) in her ~three year journey.
And, off topic, how is Loki recovering??
I have known Julie for a while now. I remember how very sick she was. Aside from meds or what ever avenue one chooses to get through and over the hill with Lyme disease...or any illness, it takes a mind and will of steel, I would say she has both. An inspiration.
It is 4:17 am. I feel like I'm hanging out with my BF and her BFFs. I am so inspired.
Keep hanging in there. I wish you good luck and swift recovery.
My Heroine!
Love,
-Otto
OMG!! I'm SO glad to see you're feeling the betterment. Really.
-Lisa
I really appreciate you sharing your journey. I think I may have chronic lyme but ELISA test is negative x2. Do you mind sharing how you were disgnosed
Thanks for being a warrior. Your feisty ness combined with other feelings speak true warriorship to me! Keep on keeping on. You and your mate rock.
I love that you can do this. I hate to ask, but are you able to work outside the home? I do not have a husband and have had to be homeless or be living with my kind ex-boyfriend after I was paralyzed from Lyme Meningitis in an area they denied it existed with positive tests... so I was denied timely treatment.
Prayers for you and for us all!!
Makes me really sad though. I wish I had support or it was different with the CDC/ILADS insurance problems.
I wonder if you can share your best treatments and supps? I have Bartonella and Mycoplasma too. That would be great!!
You are def on your up with doing yoga. I used to teach it and now I rarely practice more than a pose or two. Hopefully I will continue treating (it's been 4 months) and be able to continue to afford treatment. I don't do supps because it's too financially overwhelming, but maybe you could share your number ones??
Blessings!!!!!