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! 

Lyme activism - Please sign the petition!!!

Please sign the petition if you haven't already!  This link from LymeDisease.org sums up the problems thousands of us are facing to receive treatment, care and insurance coverage.  This is the fastest growing infectious disease in the country and you or someone you know likely has it.  Until we change these guidelines, people will go undiagnosed and untreated. Please sign the petition ~ just click here!  You will have my never-ending thanks.  

Chewable papaya & delicious customer service!

If you know me or follow my blog, you know I am a fan of Chewable Original Papaya Enzymes.  In my post of September 24, I was writing a testimonial-esque entry about them, so I went to their website to copy the link and snag stock art for my blog. I noticed they were seeking testimonials, and since I was mid-gush on their product, I submitted one.  Shortly afterward, I received an email from their director of sales and marketing asking which product I extolled.  I replied, letting her know it was the original. Her next email thanked me and asked for my mailing address so that she could send some to me.  Within a few days, I received a full bottle of 250 tablets along with 4 lifesaver-sized rolls for on the road.  Here's a shout out to excellent customer service, a rarity these days. Thanks, Dorie! 

The Potentially Marvelous Myth of Madison, Wisconsin

I was born in Madison, Wisconsin but my family moved when I was about a year old, so I have no conscious memories of the place as a child.  Last year, I had the opportunity to spend some time in Madison officiating a handfasting for friends who live there.  I didn't see much of the city, but I enjoyed the vibe of the land and the people. When I left, I thought I'd like to return someday. The newly married couple said they were planning to have an anniversary house party every 5 years.  I was already looking forward to my next trip.

Flash forward to last August.  I was in Vancouver, BC at a week-long camp and ran into an amazing homeopath, herbalist and friend from Salt Spring Island, Jamie Capranos.  I had not seen her in years and am always delighted by her company.  I scheduled an appointment with her during the week.  (This was during the time I was not on the antibiotics and was quite concerned about having a major set-back.) Toward the end of our appointment, she recommended a naturopathic doctor that she had studied with.  This ND had studied Lyme and co-infections in Europe and was treating people with good results.  Jamie wasn't sure where she worked, other than somewhere in the Midwest, maybe Minnesota.  

Shortly after I got home from Canada, I looked up the ND and she practices in - you guessed it - Madison, Wisconsin. Now, here's where it gets potentially marvelous.  What if the remaining ingredients to my healing came from the land of my birth.  It seems deliciously poetic and I'd like it to be true.  

I called her office yesterday and she is taking new patients and schedules appointments on Wednesdays. Now I'm going to search for the cheapest flights I can purchase with my frequent flier miles, check with my friends in Madison about staying at their place, and schedule an appointment to see this ND.  Hopeful!  Yes, it feels good.  Afraid! OK, that doesn't feel so good, but I reassure myself that the risk is worth it.  Better to try and fail than not try at all, and should I succeed, well, yay!!

I think I'll write to my co-Lymie and ask her if she feels like heading to Madison with me.  That would be very weird, surreal and likely quite fun.  Why not?

Today, I'm singing a new song - I love my antibiotics!

I'm 2+ weeks back into my antibiotic/anti-parasitic therapy and am amazed at how quickly some of those creepy little symptoms are receding.  Woohoo!  I am somewhat shocked by how quickly my perspective changed, but then again the anti-bug-drugs are using their super powers to apply the breaks to the roller coaster-esque feeling of barreling down hill at adrenaline-producing speeds.  It's almost exhilarating (and I can't believe I just wrote those words!)

Being the proverbial optimist, I'm a silver lining seeker and always have been.  So here's an odd thread to the silver lining.  I've recently been in touch with a long lost friend who now has Lyme and co-infections.  We've been sharing research, alternative therapies, doctor names, and any other useful (or potentially useful) information via phone and text.  We see the same doctor in Maryland and decided to make a girls' night out of our last visit.  I made back to back appointments for us and she sprung for a funky, comfy B&B in DC.  We met last Thursday evening and had a lovely dinner (I indulged in a Basil Mojito - Wow - had the aches to prove it later, but it was worth it.)  

I had a great time catching up with her.  We were able to share the nutty bits about this disease without editing or worrying about the impact on another.  What a breath of fresh air!  The evening ended as she told me the plot of a novel she's writing for my bedtime story.  It was AMAZING and I slipped off into a magical, deep sleep.

We slogged our way out of DC bright and early on Friday morning and headed up to the doctor.  It was quite surreal sitting next to her in the waiting room and comparing notes at a coffee shop after our appointments.  Such a brilliant combination of fun and duty and a lovely way to weave joy into despair and create more beauty.  Ahhhhhhh. Thanks, Karen!

This is day 2 of the new protocol

I thought I would share a visual picture of what I face in the morning. The beautiful glass bowl is amazing, magical and glittery, given to me by the artist this summer and filled with healing vibes. The peacock ore is there for 2 reasons: It's amazing, magical and glittery, too, and it reminds me that there can be great beauty in the darkness. This is one daily dose of prescriptions, vitamins, herbs, and supplements.  (I didn't include one of my favorite supplements EVER because I take 6-9 a day and it would make this pile look even crazier, but see below for more information on  incredibly amazing chewable papaya enzymes, especially if you have any digestive issues or want to support or tone your system.) You might notice the presence of chewable kids multivitamins and gummy "Omegalicious" chews in my medication photo. These are my indulgent treats to reward myself for taking all the other nasty stuff.

And here's the promised link to a supplement I discovered years ago that is the only one I've used religiously regardless of my health status.  It tastes delicious, satisfies my frequent desire for something sweet and is nothing short of miraculous in terms of effectiveness. It has been a digestive cure-all for me for years - one of those things I swear by, and there aren't many - and if you've been around me for any period of time, you've probably had them (or at least been offered a few.)  They're just THAT good!

http://www.americanhealthus.com/pages/products.aspx?prnt=Products&brand=AH&sku=001133

A strange new feeling has come over me.

I actually want to start my nauseating antibiotics and anti-parasitics as soon as possible.  I was feeling pretty darn good for the first 3 weeks once I recovered from the whole experience that ended in the ER and the cessation of the drugs, but then gradually and insidiously the TBD symptoms started coming back; a recurring twitch in my lip, eye spasms (I can't really describe it any other way) seemingly little things, then suddenly - WHAM! It's back! The awful body pain, exhaustion, appetite loss, and being driven to madness with restless legs (now under control with a homeopathic called Restful Legs. See their link below.)  Every day I'm getting worse and the scales have tipped from vacation to nightmare. As much as I hate to admit it, it's time to get back to it.

The only problem is that I'm still awaiting approval for the drug to help me tolerate all drugs. It would be funny if it wasn't so...not.  I'll call the pharmacy and see if they know how it's progressing. This is a weird dance and as my partner noticed, a full time job between dealing with insurance issues, doctors, pharmacy, and treatment trips, and the days I'm just "killing bugs," as he calls it when I'm too sick to do anything else.  Strange days, indeed.

http://www.restfullegs.com/  

I'm still in a holding pattern for my next steps

I am awaiting blood test results to follow up on my elevated liver enzymes during my ER trip last month. I returned home after 2 1/2 months on the road and saw my Lyme doc on Wednesday.  His approach is to continue to try to find antibiotics that I can keep down and give me more drugs to help me tolerate drugs.  Pharmacopia, is that you?  On Friday I saw my regular doctor, then trekked off to the pharmacy with a handful of prescriptions. After I got home, I realized one of them had not been filled and I called to follow up.  This is very weird to me, but the drug on hold is the drug to help me tolerate all drugs and my insurance company requires a verification from my doctor before they will cover it. The pharmacist said it could take up to 5-7 days so I'm officially declaring an extension to my drug sabbatical.  "YayBoo!" as we say around here.  Yay that my stomach gets a break and I can eat what I want, when I want.  Boo that my pain level and other icky ticky symptoms are increasing.

My Lyme doctor also informed me that the night before my appointment, all of his files for patients with Lyme Disease were subpoenaed.  It's hard not to feel defeated or like I'm engaged in some conspiracy theory but I am committed to a path of wellness, so there!

I also have very high hopes that I may be able to connect with an ND in Madison, WI that studied Lyme treatment in Europe and is having success in treating people.  She is teaching in Italy until the end of the month, so when she returns, I'll be writing and calling.  Keep your fingers crossed!

Health update from Day 5 without antibiotics, herbs, tinctures, or vitamins

I went for my ER follow up at my mom's medical facility yesterday and met a delightful doctor.  He explained that my potassium was low and liver enzymes high (not alarmingly, but I definitely need to follow up when I get home) and that my esophagus and stomach lining were very irritated from the Lyme drugs. He said if he took a peek, he'd expect to see a lot of irritation and possibly a lesion or two.  He reaffirmed my LD's advice to stop all meds immediately - 3 times!  He prescribed bland food and massive prescription antacids for the next 3 or 4 days and said that should do it (but don't start taking those drugs again no matter what!)

I haven't felt great, but my throat and stomach are gradually getting better.  The bad news is that the pain in my hands and hips has increased the last 2 days.  Plan modification time.  I stopped taking everything, including the natural, herbal and vitamin therapies, when I stopped taking the prescription drugs.  Now my plan is to re-introduce the herbs, tinctures and vitamins I was taking one at a time, with the hopes that they will do their healing mojo and at the very least, keep the infection from spreading and flaring up. 

I'm wildly curious about creating a false fever to go along with the teasel root tincture I'm taking.  I will definitely read Dr. Storl's book!  (Interestingly, he was driven to this research because he was infected with Lyme Disease and intolerant to the antibiotic therapies.)

This doctor is famous in Germany for his work and research on chronic Lyme Disease

He was also infected and cured himself.  A dear friend of mine in Berlin, sent me this link today on Facebook.  Dr. Storl's book has been translated and published in English, with the forward written by Matthew Wood, another famous herbalist with great contributions toward healing Lyme Disease.
  
Dr. Storl on "Healing Lyme Disease Naturally"

Quick update and alternative therapies, mainly Rife

For those of you interested in my current status after the hellish day in the ER, my doctor's office in Maryland called and told me to stop all of the medications I'm taking for TBDs until I get back to town and we can reassess my treatment protocol.  I'm grateful he feels comfortable taking me off the drugs but am still a little concerned about what my health will be like during this time on the road.  

I'm still feeling a bit under the weather and haven't had much appetite, so I'm still taking it easy and hydrating.  In the meantime, I'm considering trying out a RIFE machine when I return home.  According to the woman I connected with through a Virginia Lyme support group, a 10 second (or less) treatment would deliver noticeable results and likely after the first use.  The machines are pricey (I certainly can't afford one) but she has also offered to let me come to her place a couple of times a week to use hers.  Now that's a real dedication to helping people heal from Lyme.  (She had it herself, but is no longer symptomatic.)

I first learned about these machines from another person using one for their first successful experience in treating their TBD after lots of oral meds, IVs, etc.  I'm certainly curious and hopeful.  

RIFE machines

Well, Virginians, I hate to break it to you...

There is yet another TBD (tick-borne disease) recently identified in Virginia. Read on...

Tidewater Spotted Fever

Medication frustration takes another wicked turn

Yesterday was a pretty awful day largely spent writhing in pain in the emergency room of the same hospital my dad died in one month ago.  The various medications I take for these TBDs have chronically been hard and problematic on my body, but this experience was completely over the top.  I had massive abdominal pain, vomiting, sweating/freezing, numb extremities, plummeting blood pressure, couldn't walk, and thought I might be having a stroke or heart attack. I couldn't write and could barely speak. It was a very scary and wildly painful day that has seriously motivated me to start trying alternative therapies, and soon!  I haven't been able to take my meds for 2 days now and I wonder what the fallout of that will be, if any.  Messing around with infections and antibiotics is scary stuff.  After all, I don't want to be responsible for just killing off the weak ones, thereby strengthening the whole colony.  Eiu!!  

And just to keep things interesting, I'm on the road for another 3 weeks.  I'll keep my fingers crossed that yesterday's episode wasn't a harbinger of such things and that my ID doctor calls me back today with some advice about what to do.  I feel vulnerable, frustrated and a bit scared, wondering what's next.

Medication frustration - and at such a time as this.  My father died unexpectedly while I was in Germany.  I flew straight to my mom's house in California for the services instead of home to Virginia.  When it occurred to me that I would run out of my prescriptions, I began the phone calls to doctors offices and pharmacies to line everything up.  The good ole days of having a prescription with a chain of pharmacies that easily transferred them as needed, is gone.  I managed to get everything covered except pain management, which is disturbingly ironic in the midst of my powerful grief.  I am equally irritated and sad that not only can I not get my prescription without going to a doctor or urgent care center, everyone I talk to about it has had the element of suspicion in their voice that comes from their hyper-sensitivity to watch for drug abuse. This added layer of emotional stuff is tiring and unwelcome.  I have easily verifiable records about my protocol for all my medications.  My doctors' offices are just a phone call away.  How hard can it be?? I'm irritated with the system and the people who abused the system enough to make it so tough on the honest folks.  Urrrgghh. 

Healthcare in Germany? I'm impressed!

I'm sure it has it's problems, but this is the second time they've come through in a pinch.  Before I left home, I counted all of the various pills I'm taking to determine if I needed refills and vacation waivers before I left home.  (At this point, I should be using a spreadsheet to keep it all straight.)

I dutifully called my pharmacy and my doctor's office to line everything up.  One little snafu - one of the drugs was back ordered at my pharmacy and I forgot to pick it up on my way out of town.  Sadly, it was the antibiotic which is likely the most important one to take continuously.

After a few days in Germany, Cassandra (my friend and hostess) suggested we go to the pharmacy and ask if someone there could help us.  I only needed 6 pills to tide me over.  The pharmacist explained to us that this isn't legal, but he examined my prescription bottle and talked to her a bit, then looked us over.  After a moment, he got the pills and told us we looked trustworthy.  He even stuffed the bag with fruity bonbon samples.  

Last year, when Crow and I were here, he needed an outpatient procedure and prescriptions.  He had the same thing done at home a few months before and after our insurance kicked in, we still paid $700 plus prescription costs.  What did we pay in Germany, you ask?  Nothing.  Not a thing.  Not at the doctor's office.  Not at the pharmacy.  They conspired to take care of us in a way that was incredibly charming, efficient and free.  Wow. 

The beauty of chronic illness

The gifts (yes, I said gifts) of chronic illness are beautifully stated in this excerpt from Candice, a contributor to the SpiroChicks blog. (Link to the full article provided below.) I read this and the word initiation came to mind again.

<<snip>>

"Illness has a way of stripping life of glamor, glitz, and the nuances that blind us to what lays before us. Illness exposes weaknesses while unearthing strength, and reveals what is real and what was merely smoke and mirrors. It quakes a life until its cracks widen and what is feeble falls away, and leaves what is relentlessly real standing clearly in front of us. Living life with an illness has proven to be one of the truest ways to live and has blessed me with the opportunity to witness raw courage, true compassion, and authentic love. For that, I am grateful."

<<snip>>

Wow!

http://www.spirochicks.com/2011/10/hospital-tales.html 

  

Disturbing word of the day: Detritus

"The organic debris formed from the decay of organisms"

Yale University studies show that detritus persists in mice after the bacteria is killed (that is, if it is indeed killed, which is still a major debate!):

"...proteins from the bacteria persisted in the mice’s joints and near their cartilage. And the animals’ immune systems produced antigens to attack the dead stuff, causing inflammation and potentially arthritis.

This study provides the first direct evidence that spirochete proteins can remain long after the bacterium is gone, and in places where people can experience symptoms after treatment for Lyme disease,” Bockenstedt says in a Yale press release."

 

Check out Columbia University!

I'm so impressed by the ongoing studies by Columbia University and their very informative website!  I'm considering looking into being part of their study.  Since I don't live in NY, I think I'd be a one-shot visit but I am a textbook case for their studies on neurological Lyme.

http://www.columbia-lyme.org/index.html

They have a link to videos, games and powerpoint presentations for kids and although I have mixed feelings about this video, I am still laughing over "slime disease."

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=728:new-free-a-fun-lyme-prevention-video-game-for-kids&catid=12:lyme-in-the-schools-&Itemid=147 

Introducing some of the offspring from my marriage to the couch

Always look on the bright side of life. I'm grateful to be a Sagittarian with a sense of humor.

The mitts were a gift for my friend Sue who gave me the yarn (a friend of her's had spun and dyed the wool) and I made a pair of socks to match but forgot to take a picture.

The socks I made for myself are even cuter than the photos and the stretchy cotton is yummy!

The fireplace is my first interior paint job ever.  See the "before" picture underneath.  

 

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Sea-Bands!! I love them!

Safe and effective relief from nausea using acupressure.  These are amazing!  I'm bling-ing mine up with glittery nail polish over the ball and perhaps adding a bead and some fabric glitter.  No point in missing the opportunity to make a fun-ctional fashion statement!!

 

http://www.sea-band.com/

And as promised, here's a photo of my blinged bands.  I used some beautiful labradorite beads, re-worked from a pair of earrings made by my friend Passia, along with a couple of other beads and some fabric glitter.  Sadly, the awesome flashes of blue in the stones and the gorgeous glitter don't show up well in the photos, but just imagine...

Is the Intoxicated Penguin Walk a good thing, or a bad thing?

Every morning when I get out of bed, and often when I just get up from sitting, my hip joints are so inflexible with pain that I can only take tiny little steps until I loosen up.  My partner told me one morning that I looked like a penguin, he was right and his comedic timing priceless in lifting my spirits.  After all, penguins are adorable so what's not to love about looking like one?  

That's the penguin part.  The intoxicated bit is one of those on-going questions for me (doctors have lots of opinions both ways, so again I must be my own expert and figure out this mystery.)  I get very dizzy, come close to fainting sometimes, and can have head rushes, complete with stars, for several minutes.  Is it the bacteria dying off and creating a herxheimers reaction or is this a side effect of the medication (and if so, is that a bad thing or something that will resolve over time?) or is it something entirely unrelated like my historically low blood pressure?

Having had what's called "neuro Lyme" (the bacteria crossed the blood/brain barrier because I went untreated for almost 3 years, and trust me - a bacterial infection in your brain is not fun) this feels like the old herxing days.  But then again, its been 10 years and these are all new drugs.  What's a tick bit chick to do?

For now, I'll continue the Intoxicated Penguin Walk.  I'll give the protocol a few weeks and see what happens.  Wish me luck!

We are waking up, but oh-so-slowly

At last...

"The House Appropriations Committee acknowledges the need for continued research regarding Lyme and other tick-borne illnesses."

http://lymedisease.org/news/lyme_disease_views/gibson-amendment-passes-committee-2.html

"Under Our Skin" ~ an incredible documentary on chronic Lyme and the politics of medicine

This documentary is amazing, informative, powerful and free to view on Hulu (and I hear Netflix, too.)  It also exposes part of the underbelly of our health care marketplace, how big money is causing big suffering, why people are not getting treated and doctors are getting sued for treating patients.  Worth the watch!

Also, for parents, if your child is suddenly showing signs of ADHD or ADD and has never done so before, think back to a cold or flu that might have kick-started it and ask your doctor about Lyme.

Here's a link to the trailer and website:

http://www.underourskin.com/ 

SpiroChicks - a fun blog...

A friend of mine (also a "Lymie" as we often call ourselves) turned me onto this blog.  I love the artwork, the title and the overall vibe.

http://www.spirochicks.com/ 

Drugs, drugs, drugs. Oh my goodness, all the drugs.

The first time around, I was prescribed all kinds of antibiotics along with other symptom-management drugs, but things have changed in the research and treatment of Lyme and its co-infections (which is a whole new chapter in the nightmare series on tick-borne illness.)  

So today, my current regime is antibiotics, anti-parasitics, anti-malarial drugs, Vitamin D (a hormone, not a vitamin) teasel root tincture, and other symptom management drugs.  It's a bit staggering and my deep hope is that I'm making the right choices for this time in my healing process. 

I continue to research alternative therapies and am consulting lots of people about my options.  There is no consensus out there and what works for one person, doesn't always work for another.  It's a big guessing game.

A couple of noteworthy items have come my way in the last couple of days: RIFE machines and this very weird article about a special tick-borne disease in central Virginia causing beef allergies. (Yes, those new chapters in the nightmare series are rolling in at an alarming rate!)

About RIFE machines - I don't know anything about healing with frequencies, but it sure makes sense to me and lots of chronic Lyme sufferers are finding relief.  I'll do more investigation and see where to find a good machine for a reasonable price.  Here's a link about this groovy technology (and seems to be real good news for cancer patients, too.)  

 http://info.lymebook.com/listings.htm

About beef allergies!  Yes, a rise in beef allergies in central Virginia have been connected to the bite of a Lone Star Tick!  This is just weird!  I am primarily a vegetarian.  I eat fish and chicken from time to time, and usually about twice a year, I crave beef and will eat it. Both of the times in 2008 that I had beef, I broke out in hives.  The first time was a mild-ish case that a couple of benedryl knocked out. (I attributed the hives to stress because I was in transit to Diana's Grove for a 4-month internship and was embarking on a huge adventure.) The second time, we almost made a trip to the ER (in hindsight, I really should have gone to the hospital.  My eyes were swollen shut and I had a hard time breathing.)  I remember hearing of at least 2 other local people that had the same thing happen: never had a food allergy and suddenly allergic to beef. I assumed it was something being done to the cattle, or meat processing, or an allergy to the antibiotics given to the cows, etc.  Well, mystery solved!!  I came across this yesterday.  What a trip.  ABC has more articles on their website.  

http://www.huffingtonpost.com/2012/06/20/lone-star-tick-meat-allergy-bites_n_1613258.html

Days later, an update...

I spoke to someone in my doctor's office yesterday. I had left a message regarding the effects of the drugs and asking if I should continue to take them and push through it or stop some of them. She talked with the doctor and he said that my intense reaction to the anti-malarial drugs was quite common (I'm still not clear if it was causing a herx, but she implied this was the case) - and - to stop taking it. Let me tell you, I felt GREAT yesterday (of course, I mean that comparatively.) The couch and I hardly saw each other. That makes me smile. I've never enjoyed house work so much! It's a joyous feeling to have the energy and freedom from debilitating pain. Oh, the things that can change my perspective...

Past to Present - a Timeline

July 1997 - Infected, sick and no diagnosis
Summer 1999 - IV ozone therapy and blood irradiation (positive effect but inaccessible)
January 2000 - Disabled
March 2000 - Diagnosed with Lyme (Positive test) and began oral anti-biotics
March 2003 - PICC line to administer IV antibiotics directly into my heart for 21 days
April 2003 to August 2011 - Minor symptoms pursue but overall health is pretty good
November 2011 - Steroid shot for hip pain, original symptoms begin to creep back in
March 2012 - Going through the drill of finding a doctor that will treat me
May 2012 to Present - Seeing a Lyme specialist in Maryland, consulting an herbalist, and researching the latest cures and symptom relief protocol. 

Welcome to my blog!

I started this blog for many reasons.  My life with Lyme Disease has been an amazing, rewarding, heartbreaking, frustrating, funny, and wildly weird experience.  I  share my stories, struggles and triumphs

• to exchange hope, insight, information, and wisdom
• to open to and receive relentless support  
• to be a voice for change in the health care system 
• to process my own stuff 
• to network 
• to help find a cure 
• to laugh, inspire and be inspired

Welcome to my blog!