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Lyme Disease- What it is

I think it is time for a post about Lyme Disease.  It is the elephant in the corner of my families health issues.  Sometimes I feel like we are so busy chasing the spin off issues it creates we can’t face the Lyme directly.

By Content Provider(s) : CDC/ Michael L. Levin, Ph. D. Photo Credit : Jim Gathany [Public domain], via Wikimedia Commons

By Content Provider(s) : CDC/ Michael L. Levin, Ph. D. Photo Credit : Jim Gathany [Public domain], via Wikimedia Commons

Lyme Disease is caused by the bacterum Borrelia. There are 3 identified species of Borrelia that are known to cause Lyme disease. Borrelia was found in the remains of Otiz the Iceman who was mummified in a glacier 5300 years ago so it isn’t a new disease. It also isn’t isolated to New England in North America although that is where we think my family’s infection comes from. Lyme disease is most commonly spread by the bite of a tick but can also be spread by any biting insect.  It has been documented as having been caused by mosquito’s and biting flies.

By Photo Credit: James GathanyContent Providers(s): CDC/ James Gathany [Public domain], via Wikimedia Commons

By Photo Credit: James GathanyContent Providers(s): CDC/ James Gathany [Public domain], via Wikimedia Commons

Most people are familiar with the symptoms of early Lyme.  Bulls eye rash, fever, joint pains, muscle aches, often quite acute.  When Lyme is caught at this point is can often be cured with a 2-6 week long course of antibiotics.  Unfortunately not everyone is cured and not everyone gets these symptoms. For some it lays dormant for up to 4 months before showing any symptoms. Also only about half of all people with Lyme get the classic rash from it. In addition half of all people diagnosed with Lyme do not remember a tick bite. If you don’t catch the Lyme soon enough it is able to travel throughout the body and can be very difficult to eradicate. Most antibiotics attack bacteria in their cell wall and kill them that way.  Borrelia can change into a form without a cell wall.  It can also form cysts that are impervious to all antibiotics as well as the bodies own immune system. It forms a spirochete that attacks the nervous system and is very difficult to eradicate completely.

Here is pretty good list of the symptoms that Lyme Disease can cause.  I got it from here.

  • Brain and Central Nervous System: migraines, dizziness, brain fog, poor memory, poor sleep, lack of verbal fluency, confusion or disorientation, decreased ability to concentrate, facial nerve tics or paralysis, sore jaw, sinusitis, mood swings, difficulty chewing or swallowing, sore throat, hoarseness, muscle twitches, numbness and tingling, shooting pains, and lower back or neck pain. Lyme has also been found to mimic all the psychiatric disorders.
  • Muscles, joints, and bones: pains that come and go (with or without swelling), cramps, stiffness.
  • Circulation: too fast or two slow heart rate, irregular heartbeat (palpitations), inflammation of the heart muscle or arteries, and chest pain.
  • Breathing: sinusitis, difficulty breathing, and pneumonia.
  • Skin: rashes, itching, crawling sensations, benign cysts and nodules, and skin discoloration.
  • Eyes: pain, inflammation, blurred or double vision, retinal damage, floaters, flashing lights, light sensitivity, dry eye, and blindness.
  • Ears: itching, earache, buzzing, ringing, and sound sensitivity.
  • Digestive tract: nausea, vomiting, diarrhea, constipation, loss of appetite, mild liver function abnormalities, and spleen tenderness and enlargement.
  • Genitourinary tract: inflammation of the urethra and bladder, pelvic pain, testicular pain, and loss of sexual desire.
  • General: tiredness, lack of stamina, fever, vague discomfort, irritability, nervousness or anxiety, and weight loss or gain.
As you can see there is a wide diversity of symptoms for this disease. There can be others as well this list isn’t exhaustive. It doesn’t list the spin off issues like hormonal imbalances, immune system suppression, and thyroid dysfunction that can happen to anyone with a chronic illness. Outside of the bulls eye rash none of these symptoms are specific to only Lyme disease so diagnosing it can be very difficult. My experience has been that over time the symptoms change. The summer that I was diagnosed I was very ill and struggled with day to day tasks  I developed a stammer and struggled with comprehending reading material.  I would read the same page over and over again not comprehending the contents. The symptom that pushed me over the edge to get tested again was when I developed bells palsy suddenly.  That is very common with Lyme disease. The left side of my face continues to be a bit numb to this day. This past summer I developed hot flashes several times a day. Right now I am really struggling with recall of words and names. It is particularly bad when I can’t remember the name of someone that I have known for years. We have recently joined a new church and I wish that I could have everyone wear name tags for the next 6 months until I get all of their names fixed into my memory. My family finds it humorous when totally off the wall words come out of my mouth while I am talking. It is sometimes funny and often frustrating at the same time.

Testing for Lyme disease is difficult. Blood tests are notoriously faulty. The Lyme spirochete generally doesn’t like to hang out in the blood stream but instead goes to joints and other out of the way places. It can also live inside of red blood cells. This helps protect it from your immune system and also from antibiotics.  This also means that a blood draw looking for the bacteria or even for antibodies can easily show a false negative. The most accurate way to test for Lyme disease is with a Western Blot test. The most accurate lab to run this test is Igenex. What the western blot does is looks for specific proteins. The more proteins that it finds that are specific to Lyme disease the more likely that you have Lyme disease. Some of the proteins are more specific to lyme than others and so get more weight when evaluating a test result for possible lyme.  It also helps if you can eliminate other possible sources of those same proteins.  For example there is one protein that is also found in syphilis (another spirocheteal bacterium) and some gum disease so if you can eliminate those as possibilities then it is much more likely that you have Lyme if you find that protein.

Of course there isn’t universal agreement about what constitutes a positive test result for Lyme disease. In fact it is easier for your dog to test positive for Lyme than you. That is because the test parameters are broader for pets than they are for humans. My first test result only had one band positive and I was told that I did not have Lyme.  Then I got tested with Igenex and got a clear positive with several bands positive.  Igenex uses a broader testing parameter and more sensitive testing practices than Quest or Lab Corps. It is well respected in the Lyme community as a high quality testing facility.  In the past it was investigated for having too many positive test results but the investigation revealed that the lab was accurate.  When it came time to test my children I didn’t hesitate to do it through Igenex despite having to pay out of pocket for the test. I wouldn’t have trusted a negative result from any other lab and that would have meant another blood draw for them.

Once you know that you have Lyme and have choosen a treatment there is the problem with deciding if the course of treatment has been effective. The official stance is that if you have been treated for Lyme disease with 2-4 weeks of antibiotics what you now have is “post Lyme syndrome” and all the positive test results and continuing symptoms in the world mean nothing. There is no good explanation for why this happens but just know it isn’t Lyme disease so you can move on and stop asking for healing. As you can imagine insurance companies are very much in favor of this diagnosis since it cuts off their treatment costs pretty quickly. They can then deny coverage of long term antibiotic treatment.  Despite what the CDC says on their website there are people who have been cured by long term antibiotic treatments. People like Dr David Martz who was fist diagnosed with ALS and given a very poor prognosis but then discovered it was Lyme disease which he cured with long term antibiotics.

If you want a good picture of what it is like to have Lyme disease and of all the politics surrounding treatments for it watch Under Our Skin.  Amazon has it available streaming.

Here is the extended trailer for it.

I watched this a few months ago and found it to be very accurate in describing my own experiences with Lyme.  I didn’t have every symptom described in the film but I certainly have symptoms that are similar.  Watching this film also helped me recommit to healing my children so that they can live normal lives.  We assume that they both picked up Lyme in utero and while I didn’t know it at the time I still feel responsible for being part of the solution for them. GAPS has healed so many symptoms for them but we aren’t at full healing yet. I am eager to get there and I feel like we are constantly unraveling more and more of the answers for us.  I’m just not sure how much further there is to go.
My family has decided to fight Lyme without antibiotics. In part because the CDC is right and at this stage of Lyme infection the results are mixed when treating with antibiotics. Antibiotics come with their own risks and I have decided to avoid them. They are always there if we I decide we need them but I can see that we are healing, albeit slowly, so we will continue to plug along without them and not have to heal from the damage that the antibiotics would most certainly do to our guts. I can change my mind in the future.  The goal is health, not being right.

8 Comments

  1. Very informative post, Patty.

    What do you think of Dr. Klinghardt and his protocol?

  2. I have read everything I can find by Dr Klinghardt. I think he has a fascinating approach and I have implemented a few of his ideas into what we do. I also find him to be overwhelming in the scope of his approach and I struggle with some of the ideas (like turning off the power at night and constellation therapy). I haven't finished watching his interview with Dr Mercola yet but I'll get there.

  3. I’ve been browsing your site for a few days, and feel like I have found a kindred spirit (though you are much further into your journey, or maybe on a better track than I am!) I have a huge list of questions for you, but I will try to keep it simple… though I would love a few hours to pick your brain!

    My daughters are dx w/PANDAS, and the whole family with Lyme. We’ve done a combo of GF/SF, organic, and Feingold, with WAPF foundations in our diet for the past 3 years with improvement in behavior and overall decrease in infections, but I feel like we are at an impasse in true “healing.” I’m wanting to start GAPS in the new year because of this.

    -My DH is on abx for Lyme and because he is a strep carrier. When he misses doses, we all flare wildly with strep (girls’ behavior tanks and we all get arthritis and lethargic, etc.) I’m terrified to take him off abx, even though I know it is destroying his gut. He also has a life-long history of food allergies (true allergies that he tested positive for) along with sensitivities, plus environmental triggers. I think GAPS would help him immensely.

    -This is a version of the above question- my girls are also on abx and have been for at least a year (the older dd- for 3 years) due to their autoimmune condition, (or Lyme… so confusion about what is at play.) The instant we miss a dose, they flare wildly. The older dd, to the point she could be institutionalized :( because she rages and has debilitating headaches and delusions. Again, I know that life-long abx are a bandaid, but I’m absolutely TERRIFIED to pull them. We have plans to switch to a naturopathic dr, assuming she will return our calls!, and work with her to pull the abx. My question is- how are you treating Lyme if not on abx, and if treating with natural supplements, are these working against GAPS diet?

    I realize you are a blogger and not a health professional, but I am curious about your take on the above situation, and what your experience has been with your own family in regards to treating the Lyme in conjuction with healing the gut.
    Thanks for any insight!!

    • Hi Chickpea,
      Welcome. As you have found the abx aren’t curing you they are only putting a bandaid on the problem. We have not used them at all at this point and I hope that we never do. Your story is not uncommon to find that long term abx do not cure chronic lyme. I read those stories and decided that abx had already done enough harm to my health I wanted to do what I could to fight the Lyme other ways. We are nourishing our bodies with GAPS first and foremost. We have done the Buhner proticol for fighting Lyme. We are now doing a parasite treatment that will last at least 6 months. I don’t know if it is because I began intervention so early or what but my girls are not in crisis at this point so I have some flexibility.
      I know that NCM (the creator of the GAPS diet) talks about treating PANDAS naturally with herbs. Look in the FAQ’s on http://www.gaps.me or http://www.gapsdiet.com She really doesn’t have much to say that is helpful about Lyme though. I think that you really will need to work with a practitioner who can help you figure out a path forward. How to get off the meds and heal the gut. I hope that the naturopath you are trying to meet with is the right person for that job. It is sure to be complex.
      Patty

  4. (Trying to post this again, excuse me if its a repeat)
    Great post! I have had a terrible time with Igenex lab! Last year at this time I sent in my lyme test and to this day have not seen my results. They claim to have sent it to my doctor several times, my doctor has never received it. Eventually they just lost my name in their system after several months of attempts to get my results. They refuse to refund my money or give me another test unless I pay for it. This is really frustrating because there is no other lab with reliable results and I do not have the money to pay for their mistake. And I would really like to know if I have Lyme Disease!

    • Oh how frustrating! I would be very unhappy with that outcome too. I have not heard of it happening to anyone else.

  5. Hi Patty,

    Did you have to take anything to provoke the Lyme first in order to get a positive test result? I’ve heard that it can hide deeply if you’ve had it for a long time. Do you remember having a tick bite?

    Thanks!

    • I did not need to provoke it but some do. It is important to get tested through the right lab. I do not recall any tick bites before my daughter was born although I have had some since. That puts me with half of the people dxed with Lyme. (No rash, no recollection of a bite)

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