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!
Showing posts with label tick. Show all posts
Showing posts with label tick. Show all posts
Tuesday, October 27, 2015
Tuesday, October 20, 2015
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
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
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