Category Archives: Lymes

The journey of this blog began with Lymes.

Lyme video & Treatment Description

http://www.envita.com/conditions-we-treat/lymedisease

I cannot take credit for finding this video.  It was posted on another website I follow, the Lamp POST, who also has a great hour long video of their Lyme story.  Very worth seeing!

I hope this helps those understand treatment options and the disease more clearly.

Very well done!

Like a Crocodile…Silent, swift and deadly! (What I’ve learned about Lyme Part 2)

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(Like a Crocodile…Silent, swift and deadly!)

Lyme dis·ease

noun
an inflammatory disease characterized at first by a rash, headache, fever, and chills, and later by possible arthritis and neurological and cardiac disorders, caused by bacteria that are transmitted by ticks.

Let’s start with the definition:

1. It says transmitted by ticks, yet what it doesn’t say is that the bacteria can also be transmitted by sand fleas, mites, mosquitos and spiders. Not all of these carry the bacteria, just as all ticks do not carry the bacteria, however, there is research that has shown that these other biting insects can carry the bacteria that will make you sick. You do not have to be in the woods to get a tick bite either. If you have birds, bunnies, squirrels in your yard, you could get a tick bite. Ticks can hitch a ride on one of these delightful creatures and end up in your back yard. (http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx)

Also, if you find a tick on your body, you have to be extremely careful on how it is extracted. Once removed the tick can be tested by a lab or the health department to see if it contains the Lyme bacteria.

2. The bacteria is called Borrelia burgdorferi. Named after the scientist that discovered the bacteria in 1982. Bb as it’s called is a bacteria found in the spirochete class of the genus Borellia. A spirochete is the cork screw shaped bacteria that literally drills itself into it’s hosts cells taking it over and proliferating until the cell is destroyed. Once the spirochete is attacked by treatment it will release a biofilm protecting the DNA makeup and proteins which can make eradication very difficult.

3. The definition says “first by a rash”. Only about 60% of the patients with Lyme disease have had a rash and many (like myself) cannot recall a time of being bitten by a tick or of having had a rash.

4. “Later possible arthritis, neurological and cardiac disorder”. Unless of course you are like me, who started having chills, fever, limb numbness, fatigue, nausea, brain fog, and stabbing pains at the onset. If my doctor was not aware of my lifestyle and was not up to date with Lyme, then she could have looked at my personal blood tests and diagnosed me with Lupus or MS. As it was, she tested twice for Rheumatoid due to the high inflammatory markers showing up in my blood tests and my family history. At the same time, she started me on Lyme treatment and we ordered the IGeniX lab test to confirm.

Why IGeniX rather than the ELISA or Western Blot tests alone? “Two primary antibody tests are used to diagnose Lyme disease, the ELISA and the western blot. Doctors commonly order an ELISA first to screen for the disease and then confirm the disease with a western blot. However, current ELISA tests are not sensitive enough for screening and may miss over half the true cases. Because of this, the best antibody test to use for diagnosis is the western blot.” (http://www.lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html)

The most accurate test is the IGeniX tests. It takes several weeks and is not covered by insurance. Because the ELISA is most used as the first test and it’s accuracy is less than ideal, many cases go undiagnosed causing frustration on the part of the patient and the doctor.

Now let’s dig into what the definition does NOT say:

5. There are many co-infections that are equally as debilitating and difficult to diagnose. A few are:

a. Bartonella (one of mine)
b. Babesia (one of mine)
c. Rickettsia
d. Ehrlichia
e. Mycoplasma (one of mine)
f. Colorado Tick Fever
g. Powassan Virus
h. Q Fever
i. Tick Paralysis
j. Tickborne Relapsing Fever
k. Tularemia

The list goes on, you get the point. (For more information about any of these, just google the name and read away.)

6. Lyme Spirochetes have a 9 month life cycle, have 3 different stages of life, are difficult to kill, and unlike other bacteria that use the hosts iron supply, a Lyme spirochete has recently been found to utilize manganese.

“Scientists have confirmed that the pathogen that causes Lyme disease—unlike any other known organism—can exist without iron, a metal that all other life needs to make proteins and enzymes. Instead of iron, the bacteria substitute manganese to make an essential enzyme, thus eluding immune system defenses that protect the body by starving pathogens of iron.” (http://www.whoi.edu/oceanus/viewArticle.do?id=164849)

7. Conventional medicine recommends the use of antibiotics for treatment concluding that with their use Lyme can be cured. However, the spirochetes are difficult to kill completely due to their 3 stage life cycle and biofilms. Personally, everything I have read and researched on the matter clearly shows there is no conclusive proof that Lyme can be eradicated completely. (As my uncle said, who by the way runs a medical lab, “Get on the antibiotics to control the colony.” Notice he didn’t say to “cure” the lyme.) Most doctors recommend and insurance companies usually will only cover one month of antibiotics. With a 9 months life cycle is that enough?

I have one friend that found the tick on her, had it removed by the doctor, had the tick tested and was put on antibiotics immediately. Eight years later she is still dealing with the effects of Lyme. Once you begin learning more about Lyme disease, you realize that more and more people are suffering from the disease long after their doctor has claimed that they are “cured”.

8. Lyme is a bacteria. Bacteria love sugar. I am learning that the people that do the best are those that follow a strict diet change that includes low natural sugars, zero processed sugars and foods and those who are also strict about a gluten free diet. They also eat fermented foods and drinks along with herbs or foods that break down biofilms. They also work very hard at eating only organic and limiting their intake of toxins that could make them feel worse. Raw garlic, apple cider vinegar, lemon water and grapefruit extract also can help break down the biofilm aiding in killing the bacteria.

9. There are many treatment plans out there. There are many herbs that can also help with treatment, even alongside conventional antibiotic treatment. I have also learned that those who do better on antibiotic treatment are those whose doctors work with them to also boost up their immunity before and during treatment. (Currently, building my immunity, my adrenal functions and cleaning out my “gut” are the start of my personal protocol. I am also on microbial herbs strong enough that my doctor considers them to be like an”herbal chemotherapy.” )

Not all treatment plans are alike and people need to work with their doctors to find the right treatment plan that works for them and for their individual treatment. Some people do better with a treatment plan that someone else may not do well on. Because Lyme is complicated and the co-infections vary, people need to seek out the best option that works for them.

10. Many people with Lyme do not have the ability to detox. The “die off” of the Lyme bacteria and various other co-infection bacteria can build up in the body and cause what is called a Herxheimer reaction. This makes the body extremely sick, almost sicker than the disease itself. Many Lyme patients are unable to detox naturally. When a detoxing agent is added to the protocol many lyme sufferers will be able to clear out of their bodies the toxins that are being killed off. I was actually worse until the doctor added in Bentonite Clay, activated charcoal, and psyllium husk to my protocol. I alternate these, however, I find that the Clay works the best for my body.

11. The CDC has estimated that there are over 300,000 new cases of Lyme each year. In comparison, “The Centers for Disease Control and Prevention has reported 22,048 flu cases from Sept. 30 through the end of 2012.” (http://abcnews.go.com/blogs/health/2013/01/10/flu-season-2012-13-by-the-numbers-how-bad-is-it/) I’d say Lyme disease needs more attention by our medical community.

12. Chronic Lyme is REAL! I am a very living and breathing example of the disastrous affect of Lyme Disease. At the beginning of the summer I was tilling and weeding a garden that was the size of my house, weeding the flower beds around my house and my own personal garden, running circles around my kids and my family getting ready for camping trips and Highland Games. By the end of the summer, I couldn’t even pick my harvest of the season, nor stand long enough to grocery shop, or stay awake later than 8:00 at night. I had difficulty making meals for my kids and doing laundry for my husband. In fact, last February I was snorkeling in the Keys of Florida and lost 12 lbs. walking around the Walt Disney World parks. This past week I struggled to stay awake and to keep smiling at 5:00 in the afternoon while being wheeled around in a wheel chair at the Disney World parks. Disney is my all time favorite place to be and running to the rides and staying up late for the Extra Magic hours is what our family lives for. We enjoy the fireworks so much that we usually sit in our favorite spot for up to an hour just to see them. This trip, I have struggled to even stay awake to be able to see them and I’m not sure I’ve enjoyed them as I usually do.

Brain fog is another issue that is difficult to deal with. Yesterday I asked my husband if he was going to ride Mt. Everest with our daughter. Completely forgetting that he doesn’t ride rides, never has ridden that one and likely never will due to his own issue with vertigo. To say the least it did not bode well for either of us when he was frustrated with me for forgetting he had the vertigo and that he wasn’t going to be riding anything that swirled, twirled or sped around. What made it worse was that 2 hours previous I guess we already had the conversation with the kids and I didn’t even remember it. Ooops!

It is with great hope that if you know someone with Lyme or if you are recently diagnosed, you will find this information helpful and maybe even a starting place to help to understand Lyme.

This disease is real and needs to be taken seriously!

Please note: I am not a doctor, nor am I a licensed medical health care provider. I am only sharing some of what I have learned through months of research on a very real disease that I am currently suffering from. Work with your health care professional to find the best plan that works for your health and healing. I am not suggesting any specific treatment plan nor am I dissuading anyone from using what their doctor recommends.

Why should I care? (Part 1)

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Educating myself as well as my children has been something I have enjoyed since I began my journey of living a healthy lifestyle. Anything I did with my children when they were little was an adventure into the “why” zone. With the information now present on the internet it’s even more fun and sometimes can be a bit daunting. Whenever the kids ask me a question about something I’m completely unsure about, we research it and look for answers.

With my diagnosis of Lymes, and recent finding of several co-infections, I am finding my days filled with trying to answer the why question. Why does it hurt so badly? Why do I feel good for a few hours and then all of a sudden I feel like I’m on deaths door? Why can’t I stand longer than 20 minutes without feeling 3+ hours of pain in my feet and body when I finally sit down? Why does my right foot not want to bend, feels numb and just doesn’t work well 90% of the time? Why do I all of a sudden have severe shooting pains that come and go throughout different parts of my body that leave me disabled until it passes? Why do I think of things I want to say but the words don’t always come out or I forget 10 seconds after I thought it? Why is there no known cure for Lymes? Why do I also have multiple co-infections? Why me when so many others don’t care about what they do to their bodies, what they eat or drink or inhale? Why? Why? Why?

The list of my questions is long and unending. The more I learn the more I ask why. Most people could look at me (some have) and say, “Just take the antibiotics, find a project, rest and wait to feel better. Let the doctor’s tell you what to do and let them take charge of your health. After all, they are educated to know the answers. Why do you care to know about it? It would just freak me out, your better off not knowing.” Key statements that make me want to run to the Library of Congress, set up camp and stay until I’ve read every published study, report, article, and book written on Lymes and their wonderful debilitating co-infections. Don’t get me wrong, I am by no means anti-doctor nor anti-antibiotics. If I thought for one second that an antibiotic would heal me and actually get rid of the little buggers destroying my body I would take them. In fact, that may be part of my future protocol. For now however, I’ve done enough research, as has my doctor, to know that at this time my personal journey is difficult and weary and that my body needs more than heavy duty short term, expensive antibiotics.

When if comes to learning about the disease and it’s counterparts, I care because I am blessed to have a body that for 44 years worked well and supported me. It’s my God given, God designed body that I need to take care of. The more I know about this disease, the better off I will be to ask intelligent thought provoking questions that will help myself heal. Besides, whoever said that you needed to stop reading and learning just because you have a degree. I am an educated woman who feels that learning goes beyond the classroom door and actually begins with life skills. We teach our children memorization of dates, places, equations and names of important people, yet have we taught them to be proactive and free thinkers? Have we taught them to ask questions or to just listen to what we want them to know? Have we taught them or are we teaching them how to research everything and to be open to understanding the answers to why? If my children do not retain anything else in their school journey, they will remember that in order to help yourself in anything in life, you need to be completely informed. You need to research everything and don’t trust someone else to do it for you.

I have been asked over and over again about my illness, how I’m doing, why am I not on antibiotics yet, what is the diagnosis, how long before I feel better, etc. etc. Then, inevitably, if they are not like me and have the “doctors know all attitude”, they roll their eyes or get quiet and give me the bodily signs that they feel I’ve made every wrong decision in helping myself.

Little do they know, I have been going in to my doctors or health care professionals with questions or information that help us work together in my healing. I have the respect of my health care professionals and doctors because I care about my over all long term healing and am not just looking for the quick fix pill or idea that may help for the interim. Little do my critics know that while I sit day after day quietly waiting to feel “normal”, I spend countless hours researching every website I can find on Lymes. From Western traditional medicine to Integrative to Holistic. Oh, there are some very “quacky” ideas out there, and there are some very sad stories and videos that have scared me to tears. One even kept me up all night.

As I said before, I’m a college educated woman who does not easily fall prey to the latest and greatest. In fact, I am very aware of the effects of untreated Lymes and of the dangerous co-infections and my very low adrenals. For these reasons, I am being treated with protocols that are attacking the problems individually in hopes of long term healing. The disease may not be curable, however, the symptoms can be controlled. I love to research and will keep on researching until my journey comes to an end with this devastating disease. I look forward to sharing with you in the near future what I have learned and hope that you will find my sharing to be an inspiration for you to keep on learning.