Lessons from a Lymie!

Before we start today, let me toss out my little disclaimer:  The information found here is not a substitute for medical care.  You should always consult a qualified physician regarding any of your healthcare concerns.

Thank you for reading last week’s posts regarding my experience with Lyme Disease.   I can’t begin to tell you how good it was for my husband and me to read through them together.  There’s no doubt that we went through quite a lot, but we can see how the Lord was working during this time.  Sometimes it is hard to see that when you are in the midst of what seems to be a mess.

Today I hope to encourage you to be an advocate and fighter.  It doesn’t matter if you are struggling with Lyme Disease, cancer, or MS, you need to stand up for yourself and your loved ones.  You must educate yourself.  You must be a rock turner.   You must have a voice, and at times, a loud one.   Put fear aside.  Throw worry out the door, and stand up for yourself.

There is really no rhyme or reason to my post; it’s just a collection of thoughts.  Here goes:

1.   You Know Yourself Best

You know when you are not feeling like yourself.  You know when something is “off” or if you feel ill.  There is no one on the outside who can tell you how you are feeling on the inside.  That will only come from you.  Should a physician or two or three tell you there is nothing wrong, find someone new.  Find someone who will truly listen to you.  Find an advocate.  The list of doctors that I visited was rather long, but I finally did find one who helped.  It took some time.  Be persistent and do not give up!

2.  Early Detection + Early Treatment = Good Prognosis

With regards to Lyme Disease, early detection and prompt treatment are key.  This may be the area that frustrates me the most.  Time is of the essence.  If Lyme is treated early, most people’s symptoms resolve themselves, health is regained, and your Lyme story becomes a boring one (this is good).  The longer that Lyme is allowed to fester, the deeper it burrows into the body, the worse the symptoms get and the harder it becomes to eradicate.

The responsibility for prompt treatment is two-fold.  First, you must not ignore what your body is telling you.  Obviously, if you see a tick embedded in your skin or if a bull’s-eye rash is visible, get tested. and possibly treated.  Do not wait.  If there is no sign of a tick bite or any evidence of a rash, yet you are feeling flu-like, rundown, tired, achy, and just lousy, go to the doctor and get tested.  Demand a test.  We all feel discomfort for a reason; our bodies are telling us that something is wrong.  Do not ignore what your body is saying.

The other part of the equation falls on the medical community.  I warn you; there are physicians, not all, but some, who do not find Lyme to be a legitimate problem.  Here is my oldest son’s experience:

My son was at a friend’s house romping in the river.  A few days later we saw what appeared to be ringworm.  I took him to the pediatrician, and he agreed; it was ringworm.  We were given a topical treatment, however, within a few days the spot on his leg was growing and looking rather “angry”.  I took him back to the pediatrician who said that he still believed it to be ringworm.  He gave me a new medication.  Within a few days, the leg was worse and now my son was running a low-grade fever.  I returned to the doctor and told him that I thought it was a tick bit.  His response?  Nope.  It couldn’t be a tick bite.  He even brought in another pediatrician and her conclusion was the same.  I looked at them both and flat-out told them that I thought they were wrong (by the way, this will always earn you brownie points with a doctor, sarcasm added) and that it was indeed a tick bite.  They sent me to a dermatologist who took one look at my son’s leg and exclaimed that it looked like a tick bite. She ran a few tests for ringworm.  They were all negative.  She immediately wrote me a prescription for an antibiotic.  She explained to me that she was a mother as well, and this would be exactly what she would do for her children.  We followed up with the pediatrician who was livid that the dermatologist had put my son on antibiotics.  I remember looking at him rather dumbfounded.  We live in an endemic area; why was he refusing to even think that Lyme was a possibility?  I still don’t know the answer because we don’t go to that pediatrician anymore.

Some doctors are more educated than others about Lyme.  Search them out.

3.  Testing and Interpretation

Testing for Lyme Disease is highly unreliable.  Over the course of fourteen years, I must have had nearly fifteen tests for Lyme and its coinfections.  All but one, the last one, came back negative.  Standard lab tests yield false positives and false negatives.  There are several different labs that offer higher level, more accurate tests.  They tend to be expensive and are often not covered by insurance.  Ultimately, I found it necessary to seek out these alternative labs, but I did so only through the recommendation of a trusted medical physician.  I would not seek out these labs on your own because there are some out there that are simply looking for your money.

Most testing results are focused on what are called bands.  The CDC has set the standard for what is deemed a positive test result.  A certain number of positive bands are required.  Most doctors will use these parameters.  I’ve always had concern in this area.  If five of ten bands are needed for a positive result, what happens when someone has four bands?  In my mind, four bands shows me exposure, significant exposure.  Do we simply wait to see if the fifth band will pop up down the road?  I just think this is dangerous medicine because again, time is important.  There are other doctors who are not so concerned about the number of positive bands but instead which bands are positive.  Research has shown that specific bands (which are numbered) are telltale markers of a tick-borne infection.  I know that my doctor is more concerned about the specific positive bands.  She takes this information and matches it up with a patient’s symptoms to make a diagnosis.

4.  Treatment

In dealing with Lyme within our family, our first, preferred method of treatment was oral antibiotics.  For some whose Lyme was caught early, this course of action was sufficient and effective.  Again, this is why early detection and treatment is vital.  In my case, however, antibiotics alone were not effective.  I had had Lyme for so long, the chance of eradicating it completely was slim to none, not impossible, but certainly difficult.  Many opt to treat themselves with long-term oral or IV antibiotics.  For some this is effective.  Others prefer to treat themselves through homeopathy and herbal remedies.  There is a whole host of other treatment options.  Some are legitimate; some are not.  Some are safe, and some are not.  Here is where you will need to do your most research.  I would recommend not rushing into anything.  Not all treatments are effective for all people.

5.  Eat Well

Sugar feeds disease.  It becomes the fuel that allows it to thrive.  It weakens your immune system.  Clean out your diet.  Get rid of the sugar.  Get rid of the processed foods.  Stay away from artificial ingredients and chemicals.  Begin to nourish your body through whole foods like quality protein, fresh vegetables (organic if you are able), low glycemic fruits, and plenty of water.  Limit your carbohydrates.  Eat a rainbow of colors, especially nutrient dense leafy greens.  Eating well will only help you.  A poor diet is certain to weaken your body further.

6.  Prevention

There are some very basic things that you can do to lessen the likelihood of a tick bite:

  • When spending time in wooded areas, dress appropriately.  Wear pants.  Tuck the bottoms of your pants into your socks.  It’s not terribly fashion forward but so what!  Wear lightweight, long sleeves.  Wear a hat or cap and closed toe shoes.  You don’t have to wear full body armor, but do use common sense.  I cringe every time I am hiking and see people in the woods in shorts.  I’ll just come out and say it:  that’s just plain stupid!
  • If you are able, opt to stay on paths and avoid hiking in dense, wooded areas.
  • Shower immediately when returning from time in the woods or other high risk areas.
  • Put your dirty clothes in the wash immediately.
  • Have someone give you a tick check. Don’t forget to check your hair.
  • Always check your children for ticks.  Some ticks are as small as a poppy seed.  You must look carefully.
  • Some people use tick specific bug spray.
  • Don’t assume that it is too cold for ticks to be present.  The threat of a tick bite is present during all seasons.

7.  Share and Ask for Help

Here is the area where I made some of my biggest mistakes.  I kept my Lyme to myself.  For years I told no one.  I wanted to press on as if nothing was wrong.  I went to church, led up our co-op, and continued to live life as normal.  When I went out I would try to make everything appear normal.  I bet there are a few of you who know me, who had absolutely no clue what was going on with me.  How could you?  I never said anything.  Why did I do that?  It’s a simple one word answer.  Pride.  I have always been a self-sufficient person.  Asking for help is not a strength of mine.  Looking back I realize that help would have really been beneficial.

Also in not telling people, I didn’t have any prayer support.  Now that was really dumb on my part!  Why in the world wouldn’t I want that?  After my trouble in Williamsburg, I finally told one of the pastors at my church that I needed prayer.  I explained that I needed a respite and that I needed people to really pray for me.  Guess what?  They did, and I could tell.

Don’t keep your troubles to yourself.  There are people who are willing to help out, but they won’t know your needs until you tell them.  My name still remains in our prayer bulletin at church, along with a growing list of others dealing with Lyme.  There have been times that I have thought about having my name taken off the list because I am feeling markedly better.  That is a momentary thought; then I realize how silly it would be to do that.  I still need people to hold me up in prayer!

8.  Faith

I honestly have no idea how in the world my husband and I would have survived this experience had it not been for our faith in the Lord and our relationship with Him.  I can’t say that we completely understood the Lord’s purpose in it all, but we firmly believed that nothing befalls us unless the Lord has a purpose in it.

Some of you might ask, “What kind of God is that, that would allow you to go through what you did.  That’s not love; that’s cruelty.”  I would wholeheartedly disagree.  I have found that it is through the most difficult times in life, that the most growth happens.

I learned some very valuable lessons through my Lyme Disease that otherwise I may have never learned.  I not only learned, but saw the hand of the Lord direct us, answer prayer, and provide for us.  I realized how deep seeded my pride was.  I also saw what a gem my husband is.  I knew he was just the right guy for me, but that was really hammered home during this time.  There are some men who would have jumped ship.  He stood strong.  I always tell him that he has had to live out his marriage vows.  “For richer or for poorer”….well we’re living for “poorer”.  “In sickness and in health”….we’ve spent most of our nearly eighteen years of marriage in sickness (I just realized that).  “Til’ death do us part”…well, we came kind of close to the death part.

God is good in all situations.

This concludes my public service announcement regarding Lyme Disease!  In all seriousness, the discussion regarding Lyme should never end; there are just too many people sick for that to happen.  I would hope that funding for research would increase and that answers would be had.

I will continue to add Lyme specific posts from time to time.  Thanks for reading!

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