My Medical Protocol

I am posting the protocol that my LLMD (Lyme Literate Medical Doctor) has me on.  This is so that people know what my every day life is like, and so that I MAY be able to help someone else in some way.  Even if only minor. 

In my blog I will refer to my doctor as Dr. B to protect "their" identity.  I don't want to risk them losing their license for treating my Lyme.

It seems like everyone is on different treatments when it comes to Lyme Disease.  What works for some may not work for others.  At this time, the battle against Lyme Disease is an uphill one.  And everyone with Lyme Disease is a guinea pig.  Everyone has different co-infections. Yep, you don't just get the Lyme Disease bacteria, Borrelia burgdorferi, but you can get up to 4 other co-infections with different strains.  To learn more about co-infections please click here CALDA Coinfection Intro  I am posting this so that either I can help someone else that cannot afford a doctor (most everyone fighting Lyme Disease has to pay everything out of pocket).   Please keep in mind that this is MY protocol, I am not a doctor, nor am I recommending anyone treat themselves or follow my protocol (legal protection).

Antibiotic:

Bicillin LA (Penicillin G Benzathine) 1,200,000 units (2ml) Injected IM 2 times per week (may up to 3 times eventually)
For help in how to do Bicillin injections & more info, click here:  Bicillin Injection Info

Cost: $650 for 10 syringes

You can get generic from other countries, but it is a "pain" to inject & there can be a lot of error involved.  Someone with experience dealing with generic Bicillin talks about it in her blog so you can read about it here 

Supplements:

• Ortho Biotic by Ortho Molecular Products (7 different pro-biotics, pharmaceutical grade): 1 capsule 3x/day 30 minutes before each meal.  $55 for 60 capsules
• Digestzyme by Ortho Molecular Products (digest enzymes to aide in food digestion): 1 capsule 3x/day at first bite of each meal.  $30 for 90 capsules
• NT Factor Energy by Researched Nutritionals (Mitochondrial Formula, helps with fatigue): 2 capsules after each meal (only I only take it twice a day to save money). $50 for 90 tablets
• K-Pax by Ortho Molecular Prodcuts (pharmaceutical grade vitamins).  8 capsules total per day after meals  $38 for 120 caps
• Orthomega Select DHA (DHA & EPA pharmceutical grade omega 3, etc) 1 capsule 2x/day after meals.  $35 for 60 capsules
• Avipaxin by NeuroScience, Inc. (regulates proinflammatory Cytokines by supporting Acetylcholine) 2 capsules twice per day.  $60 for 60 capsules
• Milk Thistle (supports liver function) I buy it wherever, Trader Joes.  I can't remember cost,  I think it was around $6 for 100 capsules
• Methylcobalamin (Vitamin B12) 12 micrograms (I think it's micrograms, it's .12ml) Injected 3 times per week   $35 for 1 month supply.

Other Prescriptions:

Naltrexone HCL 3mg Capsule AKA: Low Dose Naltrexone or LND  (This is to improve my immune system)  To learn more about this little wonder drug, click here:  http://www.lowdosenaltrexone.org/
Here is what this particular website says about it: "FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders."

I have done research online about this drug & it is very promising for a lot of diseases.  I take 1 pill at night right before I fall asleep.  Cost $57   for 60 capsules (must get through compounding pharmacy).  The compounding pharmacy I use is McGuff's Compounding Pharmacy Services, Inc. http://www.mcguffpharmacy.com/  Clay knows my doc & is the ad pharmacist there.  They make my LDN & B12 (methylcobalamin) & they order my Bicillin shots for me.  He seems to be pretty knowledgeable about Lyme Disease.  They service all over the US.  Shipping is incredibly fast.  My LLMD says this is the best compounding pharmacy she's found.  Very clean, strict with regulation, etc.

**I take all the pills with a small glass of kefir.  My stomach doesn't get upset that way.  If I don't take it with kefir, there is a lot of pain involved.  Not sure why.  Kefir is also an excellent source of 10 different probiotics.  I am going to order my own kefir granules & make my own.  It is reportedly great for your immune system.

Finding God . . . . .

Up until recently, I rarely prayed.  I mean, every once in a while I would.  Like if I knew someone really needed it or I heard something sad happen on the news.  I would say a quick, "Dear God, please help that family get through this."  I don't know why I did it.  Not sure if I even believed.  But I have always believed in a "higher power".   Especially when I would look up into the stars at night.  I also know that prayer has been scientifically proven to send out energy to the Universe.  Or to wherever energy goes.


So you know how people find Jesus, etc when they are in prison, or AA or hook up with a  new girl or boyfriend that goes to church?  Or when they get sick?  Well I am one of them.  I got sick, I found God.  But in my own way.  I used to get very uncomfortable when someone would bring up God or start talking about praying or anything like that.  To be completely honest, I would roll my eyes.  Those evangalists on TV all dolled up in their painted on make up & HUGE diamonds all made me sick to my stomach.  I do not appreciate organized religion and trust me, I have tried.  I don't like how there are set ways of doing things or how one religion is right while the other is wrong.  I don't like moral judgements.  I don't think that I should live my life based on the bible.  I have yet to have ever read the entire bible.  My philosophy is that the bible is part truth, part story.  Back in the day, they couldn't explain scientificially how things and people came to be, so they made up a story to explain it to people.  Now that makes sense.  And there are important lessons to be learned in the bible.  So I think it is very important.  And probably everyone should read the bible.  Maybe I will work on that one day.  Just who's version??????

With Lyme Disease sleep isn't usually uninterupted.  I'm not sure why.  I will have to do some research on that.  I think it  messes up your adrenal glands. So I usually woke up about every hour.  I hated the nights until I started taking 1/2 a benedryl an hour or 2 before bed.  As it would get dark & bedtime approached, I would dread it.  It was my loneliest, darkest time.  I would lay awake so often in fear.  Fear of what was happening to my body.  I never knew what was going to happen next. Or how I was going to feel.  Sometimes I felt better at night than I did all day, sometimes I was worse.  Anyway, one night, I was in the most pain I have ever been in & I woke up in the night.  I was in so much pain & just felt so sick.  My head felt like it was going to explode.  I got down on my kness by my bed & I prayed.  I prayed really hard for God or the Universe or whomever is in control here to please help me.  To take this pain away so that I could sleep.  I prayed to wake up and feel better than I did at that moment.  Any amount of improvement would be ok.  And that's exactly what happened.  I quickly drifted off & woke up feeling nothing like I did.  Much more tolerable.  Hmmmm... I thought.  Maybe this prayer thing works.

So I started praying more often.  2 nights ago when I had trouble sleeping and I was scared because some of my neurological symptoms had come back I just prayed over and over and over.  Just kept repeating the same thing over & over until I fell back to sleep.  I prayed for my friend Barbara's son Chris who was in an accident on Monday and is still in a coma. :(  I pray before I get a shot of Bicillin because somestimes it takes me an hour to let my husband poke the needle in.  I pray for courage & strength.  Not sure if it helps, but I try just about everything to be able to finally tell him, "Go!"

This is a pic from a few years ago of Barbara, Angela, Me, & Lily.  If you are reading this, please pray for Barbara's son.  He is her world! 

I'm scared, is this herx or failed lyme treatment?

Tonight I am a little scared.  For the past 2 months, I haven't had any of the weird neurological symptoms that started about 1 month into getting sick.  Since I started the Bicillin injections, I have gotten MUCH better, and great improvement started within 2 1/2 days of my frist injection. 

This past Tuesday evening, I felt great.  Don't get me wrong, I never feel free of Lyme, but great compared to how I have felt since I first got sick.  So I went out to dinner with my girlfriend Grecia & then even stopped off at the mall for some very minor Christmas shopping (this outing was a HUGE feat!).  I had some aches & pains, my back hurt, so I came home.  No big deal, I just thought I had worn down for the evening.  Happens often, even on my best day.  My neck started hurting & then the headache came. I haven't had that in about 2 mos!  Well, it's 3 days later & my neck is so stiff I can barely look left or right, the stiff neck has gotten worse.  My knees have also started giving out on me again when I walk & I am also off balance again.  These were also symptoms that have gone away since starting Bicillin.  Also, the cognitive brain stuff.  I can't find the right words for things & I am putting the wrong word in a sentence.  It's starting to bother me.  It's giving me anxiety.  Is this a herx reaction?  Or is my treatment failing?

I talked to my doc yesterday & mentioned about the neck pain.  She says if it's still there on Monday she is going to have to prescribe something strong.  She doesn't want me in pain because pain weakens your immune system.  I currently have a prescription for oral Ketamine & I have some in my medicine cabinet.  But I am afraid to take it.  There are possible psychadelic effects that I dont' have any interest in finding out about. 

Maybe this is a lyme cycle, but I hope it's a herx.  Because a herx is just the bacteria dying off & it means you are on the road to recovery.  My doc think's I am herxing.  I just hope she's right.  The neurological stuff is hard to deal with.  I can handle pain, but I can't handle the scary stuff.

The Lyme Controversy

There is a big controversy over Lyme Disease and the treatment for Lyme.  I hear one of the President Bush's got Lyme Disease and is obviously cured of it.  I wish that would call enough attention to it.  But then again, I think the CDC is corrupt.  This link explains the controversy and why most insurance doesn't cover the much needed treatment.  Also why I need to start a fundraiser for my further testing of co-infections & treatment:

http://www.lymeout.org/controversy.html

Herx Reaction

I am often asked what it means to "herx" or to be herxing. Here are some explanations I found online. Basically it is a worsening of symptoms due to the antibiotics doing their job & killing off the bacteria. The die off of the bacteria causes your body to become "toxic". The kidneys & liver can only do so much to detox you, so I must drink a lot of water, & take hot baths to make myself sweat. If the herx makes me feel nauseous, I take activated charcoal. That seems to help.



It's hard to tell the difference between regular lyme sypmtoms & a herx. So herxing is good. If indeed that is what it is. But your doc does not want you to herx "hard" because it further weakens the immune system.

http://www.angelfire.com/biz/romarkaraoke/Herx.html

http://www.wildcondor.com/lyme.html

http://www.youtube.com/watch?v=YysgBDxvZ6c
This is hard to watch. If my treatment now stops working, this is what I have to look forward to. Mine have never been this bad.

How Lyme Disease is affecting me so far . . . . .

I just wanted to have a place where I can answer questions without always having to answer questions. Sometimes I want to go a day without even having to talk about what is going on. But since I'm still newly diagnosed. People are still calling every day or stopping by because they've heard the news. I am grateful! Please keep calling & coming by. But writing things down just makes it easier so I don't have to explain what I am going through. Or how Lyme affects me day by day. So here goes . .


For myself & some others, the lyme diease goes in "cycles". That's why in my updates over the past couple months, you see that I am "feeling better" & then "sick again". I thought whatever it was that was making me sick was going away, and just when I almost felt like I could get back on my bike again, BAM! I'd be in bed with the worst headache, intense neck pain, & muscle aches imaginable.

Week 1 (Hell Week)

For 7 days straight. I am literally in pain from my head to the tips of my toes. Nothing I took for pain even touched it. It makes me see things out of the corner of my eye that does not exist. I have no appetite & have to make myself eat. It makes me very irritable, depressed, & anxious. I have heart palpitations & my heart is usually either racing over 100bpm or just putting along at 58 bpm. Sometimes I am afraid if I go to sleep at night, I won't wake up. I have crazy sensations all over my body. My left hand goes numb & my muscles twitch all over. That part doesn't hurt, it's just strange. My husband doesn't know what to do with me. This week, I will call "Hell Week". Strangely, I am able to get out of bed a bit in the evening for my daily (most days) walk around the block. My headaches subside somewhat in the evening. Which is good because I don't sleep through the night as it is. During this week & the next, Amy Novak is the only one I talk to. She's the most understanding. During the other weeks, I try to give her a break ;-)

Week 2

After "Hell Week, there is a week where I just feel like I have the flu, but I am able to go downstairs and hang on the couch. I may return your calls & my Facebook updates are less negative. Symptoms are less intense.

Week 3

Then the following week (the week I am in as I write this note) I start to feel even better. And I may even put on jeans or shorts & a T-shirt instead of sweat pants or pajamas. Still, there is no blow drying my hair or applying make up. Just 30 minutes of household activity & I am exhausted. But hey, at least I shower every day.

Week 4

The last week in the cycle is my favorite week. It is the week that I feel the best. I even have a day or two where I almost feel "good" just weak & tired. I will be able to get out of the house & go to the grocery store or maybe even the mall for a bit or the movies. This is my favorite week. My husband gets to see me with make up on!! And I may even blowdry my hair.

Now this cycle is likely to change very soon. Once on antibiotics, Lyme Diease is a whole new ballgame. Not one I want to play. I will tell you more about that later. Stay tuned!

Diagnosis

Saturday, October 17, 2009 at 7:23pm



I was just diagnosed with Lyme Disease and I am terrified for my life. I have been sick for just over 2 months. Never saw a tick, a bite, or a rash. So who knows when I was infected. I was riding my bike 4-5 days a week & walking 4-5 days a week and playing tennis for fun with my fiance until one day . . . BAM. I was sick.



I was misdiagnosed as having mono (my titers are high) & subacute thyroiditis (my thyroid is enlarged & I had a severe sore throat) & saw 3 docs a NP. Never a high fever. Highest it ever got was 99.9. I was in bed. Fatigue galore! Just my body though, I didn't even take one nap during the day. I still don't. I started to feel better about 4-5 weeks after the intitial symptoms. 3 days before my wedding, I was able to get out of bed. And every day I felt better & on my actual wedding day, my only problem was stress, hypoglycemia, & just a little fatigue. But it was explainable because with all the wedding stress & out of town guests, I barely slept the night before.



I am terrifed right now. I try to stay positive like everyone around me suggests often, as if it's that easy. I have never cried so hard in my life. The past week has been very rough. I was just diagnosed last Tuesday. When my Internist (the only doc that didn't suggest stress reduction, all being in my head, & antidepressants) was at a loss as to what was wrong with me, he just said, "I'm going to run a bunch of tests & refer you to an Infectious Disease Doc that I work with at the hospital". He was sad that he couldn't help me. He asked if I had been in any tall grass or had a rash, the answer was not since end of spring, but he ran the Western Blot anyway. I had dismissed Lyme Disease previously in my internet search for a diagnosis because I never had the obvious rash or tick bite.



A friend (Kristi) of a friend (Amy) had gone misdiagnosed for 3 years & they just happened to be talking a couple days before my doc appt. I mentioned it to my friend & she said, "That's what you have! Kristi has it!" I think my friend Amy was even convinced (like everyone else around me) that this was all in my head. I didn't hesitate to look up the symptoms online & Yep, that was me. I had 80% of the symptoms. Although most minor. But they were there. I called & made an appt with Kristi's LLMD that she swore by. She said she has been in treatment for 8 mos & is feeling better. So I just needed to wait for the blood work to come back & wait for my appointment. Internist called me on

Tuesday & said, "We have an answer! No problem, you have LD, 2 weeks of Doxycycline & you'll be fine!" I took his prescription & thanked him for not giving up on me. Told him I already had an appt with an LLMD & I knew it! I will always be greatful to him for believing me!!



My mom was there when I got the call. She finally realized I was sick. I think she was in shock. The doctors had everyone close to me convinced that I was crazy. I had my husband with me at appts, my mom, my friends, . .. the docs had them convinced.



I took the Doxycycline & on the 3rd day I got really sick. I felt worse than I had ever felt. I was nauseous as hell, my neck was killing me & my head. I eventually puked my guts out & felt better after 5 hours. Was that a Herx? Never once have I felt nauseous this entire time & it was many hours after I had taken the antibiotic.



My LLMD is about an hour away from me & she trained under Dr James from the 'Under Our Skin' documentary & has contributed financially to his attorney costs. I feel I am in good hands. She said she had to take me off the antibiotic because my immune system is too weak. She is slowly putting me on several supplements to support my gut (70% of immune system is in your gut) & once I am on all the supplements, I will take the Doxycycline & Zithromax. I will also be on other supplements to support my liver & Naltrexone (low dose) for something else. I will also start with B-12 injections 3 days a week. I am supposed to be on a crazy diet that is Gluten Free, Sugar Free, Soy Free, Casein (dairy) Free. And all organic. HUH?!?! What do I eat. I have dropped 15lbs and now weigh 103lbs. As of today. I have no appetite.



My different symptoms come & go. The worst of it is the neck & headache pain. The two usually go hand in hand. I don't sleep through the entire night. I have muscle fatigue & muscle pain that comes & goes. Muscle twitching all over my body, but it doesn't bother me. My vision is worsening & I have the "floaters" in my eyes. Just to name a few. Today my muscles are so weak that I almost fell a couple of times. I am losing my muscle tone. I also have anxiety, but I think that has a lot to do with the fear of what has been happening to my body. Whenever there is a new sensation or symptom, it scares me.



I find myself crying a lot, every day. And it goes up & down, I may wake up depressed & a couple hours later, feel positive & then a couple hours after that, feel despair & hopeless and thinking that I can't get through this. I find myself getting angry at my husband because he isn't there for me. I don't think he knows how to handle this. My emotions are up & down & he gets defensive. He is working 10-16 hour days trying to keep us afloat. Most of my friends don't understand what I am going through. I think they did a quick Google Search & read that it's just what the CDC says, a 2 week dose of antibiotics & you're good to go! Little do they know, this is a long road. My doc says at least 6 months until I even start feeling better (just a guess). And it is going to get worse before it gets better. Not something I am looking forward to, and I am fearful.



My rock through all of this has been my friend Amy. I will forever be greatful for her. Since my diagnosis, my mother too has been there for me. I love my mom & need her more than ever. My mother-in-law has helped to cook & bring over dinner for us (me, my husband & his two kids). She calls & so does my sister-in-law. Just to check in & see how I am doing. My friend Barbara has started a "prayer chain" and asked everyone to pray for me. I try to sound as positive as possible when I talk to people. But really, I'm terrified. I feel very lucky to have these people in my life right now. I NEED these people right now.



I feel helpless & hopeless right now. I feel as if I have been given a death sentence. I cannot function, I am either laying in bed or laying on the couch. We don't know how we are going to come up with the money needed for my medical care. Insurance doesn't cover Lyme Disease. I need some hope.

blogging

I guess I decided to blog . . . . . that was a year and a half ago. Looks like i had something to get off my chest. I definately see blogging as being therapeutic. I definately don't think it's anything new. Remember Doogie Howser, MD? I loved that show. I especially loved the end when he would type on his computer journal. And of course, there's Carrie Bradshaw from "Sex". Great movie, by the way.

Those that know & love me also love & adore my ADD. It keeps me from "sticking" to things.

Including blogging