3 Years

I remember at my first Lyme appointment, my doctor told me we could have up to a two year battle ahead of us, and I remember being horrified.  Two years??  That seemed so long.  It is long.  Here we are three years later, and I just started IV treatments.  Every Lyme battle is different.  There's no one-size-fits-all, cure-all approach.  Considering the fact that we're battling not just Lyme, which is in and of itself a monster, but the co-infections Bartonella, Babesia, and Ehrlichia (which are also each their own monster), in addition to high viral loads, mold toxicity, biotoxin illness, genetic susceptibility and difficulty eliminating toxins... and the fact that I've had all this for 19 years, I guess it's no wonder it's been three years already!

In July, 2014 I was re-diagnosed with Lyme.  I started treatment that August.  It's been a hell of a three year ride, but right now I can say that I am feeling close to remission.  I'm not there, but I feel like I can see it.  

Catching Up:  

This last spring I had a pretty significant flare up though, with both old symptoms and some interesting (read: disturbing) new ones.  It was significant enough for my doctor to say he wanted to do another brain MRI to check for MS again (I may have talked him out of this for now, since we did one last September...).  He agreed that we could monitor closely for now.  Most Lyme patients have flareups in the spring time anyhow.  He insisted on starting IV antibiotics though (in addition to the 3 oral antibiotics and 3 herbal antibiotics).  After almost three years of treatment, I should have been doing better than I was at that moment, and since I was having that significant of a flare up, he said the current protocol wasn't strong enough.  

In addition, we had been and continued to do more labs, tests, etc. to check for heavy metal toxicity and anything else that could be causing overlapping symptoms and/or keeping me from getting better.  I was really reluctant to start IV antibiotics for a lot of reasons, but in the end my doctor was right.  We've avoided IV antibiotics for three years.  It was time to do it.  

IV Treatment:  

I started on IV Rocephin mid-June and am currently continuing IV treatment (this will be my 8th week).

I go in to the clinic every Tuesday to get the IV placed somewhere in my hand/arm and to do a treatment as long as I'm there.  The IV line stays in my arm for 3 days, so that I can do treatments by myself at home on Wednesday and Thursday.  It's been an interesting learning process -- definitely things I never thought I'd have to learn.  My nurse called me an IV pro the other day...  That made me feel good, and also like "how did this become my life?" lol.  It's really weird to connect yourself to tubing, have syringes and needles at home (FYI the needles are just for drawing the medication from the bottle it comes in, mixing it with the fluid, and then injecting it into the IV bag), to find somewhere to hang the bag and sit in your home while you infuse.  It's nice to be in the comfort of your home, but also less comforting to not be in the care of medical professionals while you do it.  The nurse taught me how to do everything, but thank goodness for my sister and sister-in-law (nurses) who answered so many questions for me.  Jess FaceTimed with me during my first infusion to help talk me through everything again.

At the clinic

At the clinic

At home 

I was so scared to start IV meds, because I had no idea how they would make me feel.  I figured it couldn't be any worse than anything else I'd been through, but IV meds seemed so much more intense to me, and I thought for sure that I'd have horrible herxes.  

I am amazed that I pretty much haven't herxed at all.  I am feeling so well, many of the symptoms that were bothering me before I started the IV have disappeared, and I'm probably feeling the best I've felt since starting treatment three years ago (and for the longest period of time... to me, that's a significant piece of the puzzle).  

We increased the dose of the IV meds two weeks ago, and I did feel a difference (a tiny herx, with headache/neck stiffness and such), but it was tolerable compared to the past.  Why am I not herxing terribly on this??  Honestly, I'm not entirely sure.  I think it's a combination of things:  we're 3 years into treatment, so the bacterial load is already way down; IV antibiotics are actually easier on your system since they bypass the gut; I think I'm doing a better job of detoxing and supporting kidney and liver function -- I'm pretty sure this has made a huge difference.  

In any case, I am so thankful to be feeling as well as I do.  In everything I do, I have thought to myself "thank you, God, for allowing me to do [this] again, pain free, or fatigue free..."  Big things, like going to visit Tyler in Hawaii and not being in horrendous pain or too tired to be able to do anything; small things, like going to the grocery store, or running more than one errand back-to-back...  

I definitely have a new outlook and appreciation of life and health.  I know that sounds cliche, but I've never meant it more.  Things can change so quickly, and I have the awareness that at any moment, Lyme could have the upper hand again.  I look back at how sick I was, I read my old symptom journals or blogposts and cry tears of heartache, because I can't believe that I lived that life; and I cry tears of joy, because I am no longer living that life.  I am so close, I know I am.  I'm realistic in knowing that "close" could mean many more months before kicking it, but it's far more tolerable when I'm feeling mostly well.  I seriously find joy in just going to the grocery store, because I am so happy to be strong enough to be able to do that; and to be able to walk my dog; and work out; and work; and NOT CRASH or be constantly trying to hide the fact that I'm in misery.  

Please send love and light for me, that the IV treatment continues to work well for me and that I continue to tolerate them well.  Please pray that I don't have any complications from the IV treatments, and that I continue to find renewed health and joy.

Please pray for my mama as she continues her fight against Lyme disease as well <3 She's a fighter.  

Are You Listening?

When interviewed in the documentary "Under Our Skin," Dr. Klinghardt of Seattle, WA says "we never had a -- in the last 5 years -- a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi.  Not a single one."  

Wait, what did he just say?  Rewind.  "We never had a -- in the last 5 years -- a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi.  Not a single one."  

What is Borrelia Burgdorferi?  It's Lyme Disease.  Borrelia are the bacteria that cause Lyme Disease.  



What do I desperately want people to understand?  Lyme Disease is called the "Great Imitator."  That's quite a name to live up to.  Why is it called that?  


Lyme Disease mimics so many other diseases.  Actually, depending on who you ask, Lyme Disease may be the cause of so many other diseases.  


Watch Dr. Alan McDonald talk about how he found Borrelia Burgdorferi in 7 out of 10 Alzheimer's patients, and Dr. David Martz talk about how he had been diagnosed with ALS, given two years to live, and then when he got the diagnosis of Lyme Disease and started treatment, his ALS not only stopped progressing, but reversed.  

https://www.youtube.com/watch?v=GCLwauRh2gQ

...  What are they saying?  That whether it's due to genetic factors, how they contracted the disease, the way the disease penetrated certain systems in their bodies, how long they had it -- whatever the case be -- that these diseases are Lyme Disease.  There are thousands of similar stories in patients with the diseases listed below.  


Are you listening yet?  


Whether you believe or don't believe that Lyme Disease can cause the following diseases, Lyme Disease sure as hell mimics them.  No one argues otherwise.  


Imitated Diseases:    
-Multiple Sclerosis (MS) 
-ALS (Amyotrophic Lateral Sclerosis / Lou Gehrig's Disease 
-Parkinson's 
-Chronic Fatigue Syndrome 
-Fibromyalgia 
-Alzheimer's 
-Rheumatoid Arthritis 
-Lupus 
-Autism 
-Flu 


Do I find it unbelievably infuriating, horrifying and fascinating that Lyme Disease mimics major neurologic diseases that we have names for but don't know what causes them?  How can that be?  A disease for which there is a known cause, causes all of the symptoms of other diseases for which there is no known cause...  

Look at the vagueness of the definitions of the following diseases, how much they all overlap, and how all of those symptoms are symptoms of Lyme Disease as well.  It's believed that Lyme affects people differently because of a number of reasons...  Your genetic susceptibility, age, how you were infected, what diseases you were infected with (co-infections), how long you've been infected, etc.  So essentially, the diseases below could be the same disease, presenting itself differently in different people based on a number of factors.  

Fibromyalgia:  (musculoskeletal / hallmark is pain, with other things...) 

"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help."

Chronic Fatigue Syndrome:  (hallmark is fatigue, with other things...) 

"Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.

Chronic fatigue syndrome has eight different signs and symptoms:  

-Fatigue 

-Loss of memory or concentration 

-Sore throat 

-Enlarged lymph nodes in your neck or armpits 

-Unexplained muscle pain 

-Pain that moves from one joint to another without swelling or redness 

-Headache of a new type, pattern, or severity 

-Extreme exhaustion lasting more than 24 hours after physical or mental exercise.  

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.

There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief."

Parkinson's:  (nervous system / movement)

"Parkinson's Disease is a progressive disorder of the nervous system that affects movement.  It develops gradually, sometimes starting with a barely noticeable tremor in one hand.  But while a tremor may be the most well known symptom of Parkinson's, the disorder also commonly causes stiffness or slowing of movement.  In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk.  Your speech may become soft or slurred.  Parkinson's disease symptoms worsen as your condition progresses over time.

Although Parkinson's disease can't be cured, medications may markedly improve your symptoms.  In occasional cases, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms."

Multiple Sclerosis:  (central nervous system / symptoms may get worse very quickly or come and go over time...) 

"Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged.

Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms.

There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms."    

ALS:  (nervous system / progressive, eventually fatal) 

"Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system (neurological) disease that destroys nerve cells and causes disability.

ALS is often called Lou Gehrig's disease, after the famous baseball player who was diagnosed with it. ALS is a type of motor neuron disease in which nerve cells gradually break down and die.

Doctors usually don't know why ALS occurs. Some cases are inherited.

ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS, and eventually the disease is fatal."  

Can I point out that often times these diseases run in families...  And they don't know why.  But did you know that Lyme Disease can be passed sexually and from mother to child during birth?  

Below are a list of symptoms (and this is not a complete list) of Lyme Disease, and this doesn't include each co-infection of Lyme Disease:  

List of potential symptoms (I say "potential," because every single case is different):  
-Joint pain and swelling 
-Psychosis 
-Depression 
-Anxiety 
-OCD 
-Cardiac irregularity 
-Chest pain/heart palpitations/pulse skips/heart block 
-History of heart murmur or valve prolapse 
-Rib soreness 
-Twitching of muscles 
-Unexplained weight loss/gain 
-Abdominal cramping/pain 
-Increased motion sickness/vertigo 
-Tremors 
-Irritable bladder, bladder pain, chronic urinary tract infections 
-Buzzing, ear ringing, ear pain 
-Fever 
-Hair loss 
-Double/blurry vision, floaters 
-Abnormal aversion to bright light 
-Unexplained fevers, sweats, chills 
-Cough 
-Shortness of breath 
-Testicular/pelvic pain 
-Neck creaks, cracks, stiffness 
-Joint or back stiffness 
-Muscle pain or cramps 
-Insomnia, disturbed sleep (too much, too little, early awakening) 
-Exaggerated symptoms or worse hangover from alcohol 
-TMJ (jaw pain) 
-Headaches 
-Tingling or numbness 
-Burning or stabbing sensations 
-Poor balance 
-Difficulty walking 
-Dizziness 
-Personality changes 
-Mood swings or irritability 
-Confusion 
-Disorientation 
-Difficulty concentrating or reading 
-Gastritis 
-Menstrual irregularity 
-Loss of libido 
-Trouble speaking 
-Nausea or vomiting 
-Facial twitching or Bell's Palsy 
-Sore throat 
-Swollen glands 
-Diarrhea or constipation 


What about common symptoms of infection in children?  
-severe fatigue unrelieved by rest 
-insomnia 
-headaches 
-nausea, abdominal pain 
-impaired concentration 
-poor short-term memory 
-inability to sustain attention 
-difficulty thinking and expressing thoughts 
-difficulty reading and writing 
-being overwhelmed by schoolwork 
-difficulty making decisions 
-confusion 
-uncharacteristic behavior 
-outburts and mood swings 
-fevers/chills 
-joint pain 
-dizziness 
-noise and light sensitivity 


What about symptoms in children who may have been born with Lyme?  
-frequent fevers 
-increased incidence of ear and throat infections 
-increased incidence of pneumonia 
-irritability 
-joint and body pain 
-poor muscle tone 
-gastroesophageal reflux 
-small windpipe 
-cataracts and other eye problems 
-developmental delay 
-learning disabilities 
-psychiatric manifestations 


Just in case you're thinking "well that's a lot of possible symptoms...  How do you know Lyme Disease isn't actually Chronic Fatigue Syndrome, or Fibromyalgia, or something else, you crazy...?"  Because those diseases, the way they're defined, are just names with a list of symptoms for which there is no known cause or cure.  People with the symptoms of those diseases have later been proven to be infected with Borrelia Burgdorferi (Lyme Disease).  

Are you listening?  

Still Moving Along...

And just like that it's been another 4.5 months since my last post.  Things continually change and I continually wait for more test results or appointments before writing again...  Fall and winter have been overall up and down, but still overall up!

Treatment has been continuous, but eased off of and hit hard again a few times throughout the season for a couple of reasons:  

Surgery:  

If you recall, I had an MRI done last fall to basically make sure we weren't dealing with a neurodegenerative disease on top of Lyme and co-infections.  Thankfully that was ruled out, but we found mold toxicity in my brain and cysts in my sinuses.  We're still working on figuring out the mold toxicity, but I did meet with an ENT to go over the MRI results and get his perspective on the cysts and whether or not they were dangerous.  Turns out we decided to leave the cysts alone, because they would've had to scrape the edges of my sinuses to get them entirely (owww...), which would leave scar tissue, and they often times grow back anyway.  It wasn't worth it to me if they weren't thought to be harmful...  But unexpectedly to me, and unrelated to Lyme, we also determined just how bad my deviated septum was, and that I had concha bullosa and bone spurs that were also blocking my airway.  Now I know why it's been so hard to breathe out of my nose for so many years!  

Although these weren't the things that sent me to the ENT to begin with, it was good to find some answers to my breathing woes.  After talking it over with my Lyme doctor, I decided to go ahead and have the surgery to excise the concha bullosa and bone spurs, and repair the septum, because you know, breathing is important.  The surgery was successful in that my airway is clear for what feels like the first time in 10-15 years!  Apparently it'll still be healing for the next 6 months or so, but the difference is already awesome.  I'm thankful that the surgery didn't set off any major Lyme flare, which was a concern.  

In regards to treatment during this...  I started Rifampin at the beginning of December, which I'm familiar with because I took it for a long time with my previous doctor.  The goal was to start this before surgery in order to simultaneously fight Lyme and co-infections, as well as the MARCoNS infection that we'd recently found out that I had in my nasal passages.  We wanted to get that under control before surgery on December 20th and Rifampin is one of the only things that can knock that out.  

I did ease off of my other antibiotics during December (Flagyl, Alinia and Malarone) because I didn't want to be having a severe herx reaction and dealing with the aftermath of surgery at the same time.

When I started back up on Flagyl in January I had a pretty good herx reaction (and by "good" I mean terrible) with headaches, chills, migrating pain, zapped energy, heart palpitations and internal tremors so bad it brought me to tears.  I'm glad I eased off during surgery.  That would've been awful.    

Europe:  

Due to January's herx, I decided to take it easy again and cut back on treatment while Tyler and I traveled to Europe at the beginning of February.  I didn't want to be in severe pain or not have any energy to keep up due to herxing.  It was actually pretty amazing, and we feel as though that trip was a testament to how much I've improved overall.  I didn't experience horrible neck, back, or hip pain on the 10 hour flight to Amsterdam, or the flight to Munich, or the two hour bus ride to Garmisch (just some pretty bad, but short-lived neurologic hand and arm pain), which you have to understand is the most shocking thing in the world.  Often times it's hard to sit in a car for 30 minutes.  My joints and muscles usually can't handle it.  Somehow they handled our trip like a champ, and I was able to walk and walk and enjoy all the sights without being in pain or fatigued.  I wondered if pushing so hard would catch up with me, but it didn't seem to much (at least not like I expected it to).  

Now:  

I started back up on my full protocol on the 16th, and so far I haven't had the kind of herx reaction that I expected...  I've had an increase in internal tremors again, but I haven't had the severe head/neck/jaw pain that usually accompanies my Flagyl herxes.  I'm thankful for that.  

My next appointment is at the beginning of March and I'm curious to see what our plan of action will be at that point.  At my last appointment, we'd discussed taking an antibiotic break soon-- maybe in March or April-- to both give my body a break from them, and to trick any hiding bugs into thinking we've stopped treating so that they come out of the woodwork...  Then we'll hit them hard again...  Positive thoughts for the possible upcoming antibiotic vacation.  Coming off of treatment is always scary as we wait for a possible relapse.  

Overall I feel like I'm starting to feel more like a normal self again...  I say "a normal self" and not "my normal self" because "my normal" has been so abnormal for so many years.  I think I'm gaining a new baseline.  I'm realizing lately that I'm having some moments of feeling so well that I'm shocked because I never thought I could feel like this...  Like realizing that my hips don't click and hurt when I walk anymore...  Like, at all.  They used to never NOT click...  For about 18 years...  I knew it was from Lyme, but I guess it was something that I thought would never go away.  And it has.  My biggest, most consistent and long-time symptom has gone away.  That is incredible.  Reminders like that have given me a different sense of hope.  That feels really good.


On we go.