Week with the Doctor

Just Completed my Second Week at the Clinic for the Year

I spent the week with the doctor, this is the second trip this year.

It went extremely well, my test results as a whole have stayed consistent and I haven't gotten any worse from the last time I visited the clinic. I have been feeling great, going to the gym 4-5x a week, i've been sleeping well, had decent energy, and for the most part feeling normal. He is happy with the progress I have made since my visit in March, once again he said there is no lyme or pathogen's in my system causing me issues, its just a matter of cleaning up the damage that the lyme has left.

Since this time last year, I have gained around 20lbs, which is a big deal for me. I still need to gain more but it is not something I need to worry too much on. This week the doctor did spend some time focusing on my gut so that in theory I can start eating more sooner rather than later. He is not too discouraged by how much I eat, but he does want my appetite to be more consistent (because some days I couldn't care less if I ate or not).

He did work on my gut, brain, lungs, liver and heart this week and that was it. I am taking probably half of the amount of supplements as to what I normally would be taking-which is fantastic. No parasites either, which was a problem forever. Parasite treatment was the worst too!

I am pretty excited, I won't need to see him again until March next year. If it wasn't for my school schedule limiting when I can and cannot go I probably wouldn't go back to the clinic for a year. My March visit next year will probably be the only visit to the clinic next year, which would be the best yet. This year and last, I visited the clinic two per year. Back when I first started going I went 3x the first year, I think 4x the second because I ended up getting very sick (or it may have been the third year...I would have to look back at my notes). In total I have been going for 5 and a half years, which is daunting to think about. Niether my parents, my doctor, or myself thought it would take this long to get my body back to normal. I still struggle with issues here and there, sometimes I do still feel depressed or defeated, I still just get totally worn out sometimes, and I do have to push myself hard to keep my motivation. But. I am doing well. When I have a bad day, I know it will be short lived. Instead of a bad month its just a bad day. I like being able to live my life without really having to think "oh yea, I have lyme disease"

I have made great progress over the last year, I am feeling much better and feeling more normal. I have to say I have one of the best doctors in the world!

I probably will post less on my blog only because I do not have as much to share, but I am not leaving by any stretch. Years ago when I spent so much time reading lyme blogs I found that some would just end, without any idea as to what happened to the writer. Some others would end when the writer started doing better. I want to continue to catalog and share what happens with my life, because Lyme has been a part of my life for so long it has shaped my future.

Because of Lyme I chose to pursue a career in alternative medicine, I will be applying to grad schools in the next month or two. I plan on becoming a chiropractor, I am also considering pursuing a Masters in psychology so that I could be a counselor in addition. In December of this year, I will finally finish my undergraduate degree in psychology. I am super excited for this!

Years ago, in one of my more emotional posts on what lyme can do to ones mental state, I talked about how I felt like it hurt me more to dream about the future because I was not healthy or capable enough to do the things I needed and wanted. I feel like now, I can dream all I want and my body wont be what holds me back. I know psychologically I will struggle a little bit more than others when it comes to some things, but because I know that and I have had some great resources, I will now be able to cope more so than in the past. Brain fog and forgetfulness still happens, it may even be a "normal" amount-truthfully I don't know. My doctor told me that most likely what will happen is that I will start remembering more from here on out, but the things I have forgotten over the years may or may not come back. SO five years from now I will remember this point forward, but some things from five years ago now I may never get back. Which is ok, because I still am making progress.

I have some other "health" goals I need to push for myself that all of us, chronic or not, need to be working on. I have mentioned before about how much my psychology teachers have pushed us to manage our stress, because that will be the prevention we need to keep away from all sorts of ailments. I need to work some more on my spirituality, I have gotten so bad at reading books of any kind because it is hard for me to sit down and read-especially if it is something I want to read to remember. I need to get back into doing some reading and studying, outside of school.

I pray often but I would not say I have been pushing my relationship with God very much as I should be.

I want to continue being able to share with others with lyme or chronic illness that there is hope, ignore what the doctors or naysayers say and push your own pathway towards healing. I have no idea if I will ever have a lyme flair again, I may not or I may have a lot more ahead. Who knows. But what will count is how I handle it mentally, physically and emotionally.

The Injury that Changed my Life

In my first post I told that my illness skyrocketed  after I was injured. In this post, I will explain my injury.

In 2011 I severed my elbow and broke my wrist. I lost all feeling in that arm. It became swollen to about 3 times it's normal size.
The injury happened at 1pm. I went to a clinic nearby, the doctor there told me I needed to find a neurosurgeon because of possible nerve damage. Since that doctor decided he wasn't qualified to treat my injury, all he could give me for the pain was extra strong Tylenol. A severed bone and a broken wrist...yea that Tylenol was a joke.

I was admitted to the hospital later that afternoon. A doctor checked out my X-Rays and told me  for sure he couldn't just set the bone. It would take surgery...
It was so late in the day already, surgery had to wait until the morning. I was finally given morphine at 10 pm that night. Nine hours I was in pain with no end. I was knocked out when the pain was finally under control. Falling asleep after this was great, especially considering I am a chronic insomniac and usually sleep is not that easy to accomplish.

The next morning I was woken up for surgery. They told me it would be short and I would be back soon. Easy right? I was just glad they were about to let me go back to sleep.

Next I was taken to the operating room. The anesthesiologist started her job and told me to count back from 100. I made it to 92 fine, kinda started waffling... and then she told me to keep counting. I ended at 89 when I finally went out. This was about 7-7:30 am. I couldn't wake up until 4:30 in the afternoon. When I did finally wake up, it was sudden. I was wide awake.

     This was odd for me. I normally only slept a few hours a night...I had just slept through the night(not well but I did) and then again through half the day. Where did this come from?! I was supposed to be knocked out half an hour.

I had the cast on for 9 weeks. The cast started a few inches past my shoulder all the way down to cover half of my hand.
A few weeks after getting the cast off I started physical therapy. 9 weeks in a cast, I could hardly use my arm. No strength at all, couldn't even hold a pen. I still had pins and needles in my hands and fingers. My elbow could hardly move, my wrist bent downward somewhat, and my thumb and pointer finger were paralyzed. (even today I have not regained 100% of the feeling in my hand)

I hated it. I have never hated something this much ever before. It was so painful. It hurt more than the injury itself most sessions.
I followed their regime for six months. I gained some mobility back in my elbow and I could bend my wrist downward.
I went back to the doctor for him to check my progress. He looked at my arm and said "You can feed yourself now with that arm. You don't need anymore physical therapy. Good luck"
I was absolutely floored. I was 13, my arm after six months moved enough for me to feed myself so good enough.
My wrist didn't even move upward. I could flex my hand down, the highest I could move it was even with my arm. My elbow wasn't much better. I could not even come close to fully extend it or touch my shoulder, though I could now bend all of my fingers.

13 years old and less than half of my normal arm function was "Good enough"

I moved on and spoke to my ND. To my surprise they had answers for me. They use a device that emits far infrared laser, it is used to speed healing.

I would go to the ND twice weekly and they would use the laser coupled with massage and another device called a "precusor" from my shoulder to the tip of my fingers. In two months my arm was 95% normal and my strength was returning to normal. It wasn't painful and the results were astounding, after each visit I could see that my arm had improved.

After these two months with the ND with laser therapy were up, I was officially done with anymore treatment on my arm. This whole deal with my broken arm is what caused my LD to go out of control and land me where I am today.

How I was Diagnosed

     Lyme disease is a tricky organism to find. Easy to contract...but a pain in the rear to locate. The tests are insensitive, and the symptoms can be hard to narrow down. I mean really, do you know how many ailments fatigue and joint pain is associated with? Its not a small number!! Fatigue can be caused by anything, insomnia, the flu, mono, hypothyroidism, a cold, cytomegalovirus, exercise, etc.
Joint pain is not as common as fatigue. Joint is usually only associated with osteo and rheumatoid arthritis, which is lyme is misdiagnosed as often.

     PCR, Western Blot, and ELISA are the most common tests utilized for diagnosing lyme disease.
Usually a doctor will order an ELISA (enyme linked immunosorbent assay) first, according to ILADS it misses 35% of culture proven lyme disease. That's a big number to just ignore. 35 out of every 100 people are told they tested negative for lyme disease, even though they are infected.

     The western blot for lyme disease is the most favorable test in the lyme community. This test detects proteins in the blood which are measured as bands. Some of these bands are extremely specific to the lyme bacteria, here is a breakdown of each individual band meanings.
Some of these single bands can prove the presence of borrelia (band 18), while most are indirect i.e. band 41.
The western blot is so popular because it can show the level of infection. Igenix specifically shows how positive each band reacted, some are low + and some are higher +++. The more + the higher the immune response towards the band. One thing Igenix does that is unique is that they show equivocal results. Equivocal is the fine line between positive and negative, something showed up on the test but not enough to call it a for sure positive.

     The PCR (polymerase chain reaction) test is also popular. PCR is very accurate but not sensitive. The infection has to be high for it to be detected, but a positive result of this test has an almost 0% occurrence of false positives. The ELISA can have false positives (though rare) and the western blot bands can be reactive to other pathogens. The PCR is not as popular as the ELISA and WB because it is more expensive and can miss new infections.

     Personally, the only thing I ever tested positive for was rocky mountain spotted fever through Quest. I was also tested through Quest for lyme (ELISA) and ehrlichia, but they always came back negative.
When I started to do my own treatment I ordered a kit through Igenix. Those tests all returned negative for babesia, bartonella, and anaplasma. A lyme EIA was equivocal and the western blot had band 41+ (ill post the results if I can find them). The EIA could be considered positive by some LLMD's, I don't think much of it.

     One of the best methods, however, is clinical diagnosis. This is when a doctor matches your symptoms to the illness, ignoring negative test results. This is also how I diagnosed myself long before any doctor told me what I did or did not have. Most people in the Lyme community will tell you to find a doctor who is capable of a clinical diagnosis. I agree with that, no blood test is 100% accurate. Doesn't matter what its looking for, mistakes can be made.

     After the Igenix results is when I returned to the ND. The ND I go to utilizes a SCIO biofeedback device. I like this device because it detects the body's reaction to so many things at once. It will also show stresses towards pathogens. My body was stressed towards RMSF, Lyme, malaria, ebv, cmv, and some parasites. Ill be darned...something actually showed up! The malaria could be a cross react with babesia, which is a cousin to malaria. That's what I am calling it anyway.
Before this, I had received 3 consecutive negative tests for RMSF, yet it showed up as a high stress right of the bat on the machine. Imagine that, my body knew it was there, my immune system just wasn't reacting anymore.

     ND's cannot officially diagnose me with anything, only MD's and DO's are legally allowed to do that. They can advise for and against supplements, but they cannot tell me I have to do something.
So they advised me to take several supplements to bring my body back into balance. This went well, but none of my symptoms ever actually ceased.
I still go to the ND. The machine can also test reactivity to supplements (like muscle testing) and if they are causing my body stress. Since I have to treat using supplements entirely, this can be an invaluable resource. I also like to see how my stresses change from month to month. I went today in fact, that will be my next post.

I hope this post offered you some clarity towards how lyme can be tested for!

Chronic, Incessant insomnia...Permanent or Temporary?

     I have never understood insomnia. I have been researching Lyme disease and most of its symptoms for years, but insomnia puzzles me to no end. The purpose of sleep is to restore the body right? So why wouldn't I need more sleep? I sleep about four hours each night-give or take...Not very restorative to be honest.
     According to Dr.Horowitz about 70% of Lyme patients suffer from this chronic insomnia. It remains untouched by common sleep aids such as Ambien, Benadryl, or Restoril, but why? During my research I found Lyme disease isn't the only chronic insomnia causing illness. People with bipolar disorder can also have the same sudden onset of insomnia. Some patients stay so wired they cannot
sleep for days. I have met people who can attest to that.
     Lyme and bipolar disorder are both considered chronic illnesses. The definition of chronic is "Marked by long duration or frequent recurrence" according to Merriam-Webster.By this definition,
people with bipolar disorder or Lyme disease are sick for a long period of time(or until death). During this time, the patient is not only accumulating damage from the chronic disease,but also the
chronic symptom...catch 22, isn't it?

     Personally I have had some form of insomnia my entire life. As a baby I slept fine, I just took a long time to fall asleep.  I would sleep 10 hours,so no one thought anything of it (that's what I was told at least). On the other hand, when I was 6-7 years old I stopped sleeping (no Lyme DX yet), I could be awake until 2:00 am before falling asleep. When I was a young teenager I used this to my advantage. Wide awake at 1:00am was a great time to catch up homework.
Not much has changed since then actually. (lol)An average night is 3:00 am before falling asleep. A bad night,on the other hand,may have absolutely 0 minutes of sleep whatsoever. None. Wide awake straight through the night.

     I have tried everything. No dice.
Valerian root tincture, Ambien, Restoril, melatonin, homeopathic sleep remedies, herbal blends of sleep remedies, avoiding electronics and light for hours before bed...the list goes on..

I had my saliva hormone levels tested, high melatonin in the morning, normal in the afternoon, low in the evening, and then low at midnight. Melatonin supplementation seemed like a good idea. It was one of the only supplements to make a minor difference. It just included one side affect, a hangover the next morning. I would sleep late, struggle to wake up, and then feel groggy the whole day. I tried playing around with the dose, again, no help. I quite after that. If my body wanted sleep it could have it, but for some reason that's not what it wants. There is a reason, I just don't know it.

     Dr. H recommends supplements to lower high cytokines. Cytokines are a group of inflammatory proteins. The anti-inflammatory diet, which I have followed since my ND recommended it to me years ago, should lower these. In theory...
Dr. Jernigan and Dr. Hulda Clark teach that excess ammonia in the blood stops the brain from sleeping. Both claim a high success rate for curing their insomnia patients. I  tried Dr.Clarks method, taking L.Ornithine before bed. The protocol starts with a low dose then builds up over several days to a rather high dose.
It helped me feel more alert during the day. No change at night though :/
I wonder why that is.

     I don't really like the idea of being attached to a prescription drug, just to fall asleep a few hours earlier. Especially for an unspecified period of time. After all, I learned to deal with insomnia a long time ago. Anymore, its not big deal to me...just irritating.

     What do you guys use to treat your chronic insomnia? Is it worth trying?

Until next time...

My Story, The Beginning

   The story of my future started when I was 12 years old. I was at camp having a good time just like any other kid. During the night in the middle of the week I was bitten by a tick. I woke up about 6:00 AM to the feeling of it hanging onto my leg. I stood up and checked it out under the light, noted the size, pulled it off, and flushed it down the toilet. It wasn't the typical lone star tick I normally could find in Georgia, it was black and rather large, but not engorged.
I had gone to bed that night about midnight, after a shower. No tick whatsoever So at most this tick was attached for six hours. Ticks, according to the IDSA have to be attached a minimum of 24-36 hours to transmit an infection. That's also what the other Boy Scouts told me...

     No rash, no blood, no symptoms...couldn't be a big deal right? Wrong...oh so wrong.
A few months later I had a traumatic injury and required surgery. I felt the worst I had ever felt in my life after a minor, 15 minute surgery. The surgery wasn't expected to last long, they sedated me just enough for half an hour. Surgery started around 7:00 AM, I counted back from 100, made it to 89, then I was out. I was totally out cold until 4:30 PM. I slept about 9.5 hours after about half a nights sleep.  I have been a chronic insomniac since I was in my mid single digits. So to be totally out of it, for so long, was very out of the ordinary for me.

     Fast forward a few months after surgery, injury is fully recovered. I still had this unshakable, intolerable fatigue. I had been told all of these stories about how anesthesia can make you feel terrible...but still progressing not diminishing after six months? *New problem, not anesthesia* I had constant fatigue and insomnia, joint/muscle pain, and dizziness...turns out, this was only the beginning of a long list of symptoms.
I decided it was time to do something. So I visited my local naturopath. Long story short, they found candida overgrowth and excess inflammation. These were both caused by the injury, and seemed to fit the profile.
I followed the anti-inflammatory and anti-candida diet for several months. During this time they also had me taking a regimen of anti-inflammatory and yeast killing herbs. My symptoms did improve and pain became tolerable. Several months and a plateau later, I moved on to the next doctor.

     During my time with the naturopath I learned to start doing my own research. My list of symptoms matched Lyme. Migrating joint pain, just one of my symptoms, is extremely specific to Lyme. This symptom should have made any doctor suspicious of Lyme disease. When it came to visiting doctor #2, I was let down when no Lyme or Lyme test was mentioned. He did however test my blood for Mono/E. Barr, thyroid hormone levels and diabetes. All tests returned normal. I didn't bother going back.

     A few months later a kind friend referred me to doctor #3, whom I first visited August 2013. I loved this doctor! Doctor #3, whom ill call Dr.L, was extremely thorough. This doctor asked me every question imaginable and listened to what I had to say! A huge change to the previous doctors who had diagnosed me, probably, before I ever set foot in their office.
Ten vials of blood later-Bingo! Positive titers for Rocky Mountain Spotted Fever. Or as I called it, the answer I had waited so long for. It sure took long enough!!
The Lyme test was negative, not all that shocking considering their poor track record.
Dr. L had me on a regimen of liquid doxy and IV rocephin, IV C, and IV mag/b vitamins. I would take the antibiotics for a month on, month break, retest and restart ABX. So basically I took ABX every other month. I would only do the IV drugs whenever I went into the office.

     I followed that protocol for about a year until it just stopped working. In the beginning (first two months or so) I did feel better. I never felt normal, just improved.
Starting around the 4th round, doxy just made me worse, with no improvement afterwards.
The last round of abx I took was 28 days of ceftin(ceftriaxone). After that, which did nothing, I just quite with antibiotics. Have not taken any since.
The IV drugs/vitamins did make a noticeable difference.
The IV's consisted of Rocephin, Vitamin C 10,000mg, sodium bicarb, magnesium/b vitamin combo, and sometimes fluconazole if yeast was flaring. I liked the rocephin and Vitamin C. They made the most noticeable (and lasting!) difference. After a year and a half I quit going to Dr.L, I had gone through all of their resources. Still sick...

      I started going back to the ND in Sept. 2014. I figured now that I had a DX, I could try out their treatment options. I prefer natural methods to synthetic chemicals anyway.
The ND, who uses biofeedback as a primary testing resource, found a reaction to  RMSF, lyme, babesia, EBV, and parasites. Dr.L had had me do parasite cleanses in the past using both ABX and herbs, so this wasn't a new subject to me. I had found humaworm online and chosen that as my parasite killer of choice. The ND, on top of parasite cleansing, had me use their protocol for the lyme and virus. Their protocol consisted of colloidal silver, Biocidin and TOA free cats claw, along with  adrenal support.
It helped, certainly stopped progression if anything.

This brings us to the present.


Since starting with the ND I have been treating myself a good bit. I have used andrographis, eleuthero, and cryptolepis per the Healing Lyme protocol.  I have also used grapefruit seed extract, houttyunia powder, l ornithine, lithium, b complex, chlorella, DMSA, and several other things. (highlighted again here)

My current symptoms- roughly worst to least-
Insomnia (ambien and restoril did nothing, its anywhere 2-6 am before falling asleep)
fatigue
Brain fog
muscle twitching
muscle pain
tremors
sweats
heat sensitivity
dizziness
muscle/limb jerks
skin burning
tinnitus (CoQ10 has helped somewhat)
dizziness upon standing
chest tightening briefly making it hard to breath


Currently, 10/21/15, I am taking a B complex, Ledum Pal. 30C, Calc. Phos. 30C, ALA, Arnica Montana 30C, lipo vitamin C, milk thistle, magnesium, and iodine.

This, has only been the beginning of my fight against lyme disease and co-infections....

Until next time, God Bless and goodnight