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!

Lyme Disease Part IV: Finding Normal Again

Continued from my previous posts:  Lyme Disease I, Lyme Disease II, and Lyme Disease III.

Sickness and deterioration had become the new norm for me. It had been so many years since I had been normal that I plum forgot what normal actually felt like. But that would soon begin to slowly change.

There are people who show kindness, and then there are people who open up their heart to you and love flows abundantly. How fortunate I was to have a friend who not only opened up her heart to me but her home as well. We both embarked on a new journey to treat our Lyme Disease. I would make weekly visits to her home and spend roughly three hours completing a treatment and a “sweat session” in the sauna. I would tuck myself away in a spare bedroom, but I was still there, in their home. Some people may be able to put up with this for a few weeks or even a few months, but how about a year or two? Well, this dear friend and her family did just that. I’ve lost track of exactly how long I made my trips to their house, but I can estimate that it was close to two years. Now that is love in action. That is bearing one another’s burden. That is showing the love of Christ. I know you are reading this, friend. Thank you just doesn’t seem adequate!

Slowly, bit by bit, I was regaining strength and sanity. As I would sit through the therapy I would feel my body ache and groan and would watch my muscles shake. Something was certainly going on. There was a fight going on in there. Finally! I experienced significant die off in the first few months. This can be bitter sweet. Die off typically makes your symptoms worse temporarily as your body rids itself of the toxins. But in a way, I welcomed it. I knew that despite feeling terrible, good things were happening. Those spirochetes were dying!

During some of my visits I would chat with my friend about her experience out in Arizona. Although she was there for cancer treatment, the facility had discovered her Lyme Disease as well. They were doing amazing work making people well again. She encouraged me to think and pray about going out there for a consultation. They would be able to better assess my condition and run much more advanced lab work. I told my husband about it; he was all for it. However, we simply did not have the financial resources for such a trip. We had exhausted nearly all of our savings and the money we had set aside to buy a home; we were carrying some debt as a result of all the doctor visits, lab work, tests, and treatments. Lyme disease had ravaged our finances which, by the way, is a very familiar story with Lyme patients. To travel to Arizona we would need to fly and there was no way I was going to fly clear across the country by myself. I had a hard enough time trying to get out of Williamsburg in one piece! We prayed about it, but I will admit, I didn’t think it would ever happen. In hind sight, I didn’t trust the Lord. “Oh ye of little faith!”

A few weeks later we received a very interesting phone call from my brother-in-law. It went something like this:

“Dad (my father-in-law) has decided that he wants to take a family vacation.
He wants to go out to Arizona to see the Grand Canyon, and he wants to
take the entire family out…kids, spouses, and grandchildren included. He’ll
pay for everything: airline tickets, car rental, and a house rental for all
of us.”

Say what? Surely this was some cruel joke. See, my father-in-law has never, and I mean never, taken a vacation anywhere…in his entire life. Not only that, but he’s going to pay for fifteen of us to make this trip? This was insane! Nope, it was the Lord, and nothing is impossible for him. So we worked to plan our trip to Arizona. We booked our flight out a day before everyone else would arrive. We would fly into Phoenix, stay overnight, and have the consultation with the doctors the next day in Scottsdale. We would then drive up to Flagstaff to meet up with everyone. Our only expenses would be a hotel room for one night and $150 for the consultation. This totaled about $250.

I spoke to the doctors out in Scottsdale a few times before our visit. To save time they encouraged me to try and arrange for the required blood work here at home, then bring the results with me. This sounded easy, but the tests they were requesting were not from ordinary labs. These were specialized tests. As I prayed about what to do, I remembered the last doctor I saw. She was an integrative doctor meaning she treats ailments both traditionally and holistically. She hadn’t helped me with my Lyme, but I felt that I should see her again.

When I arrived for my appointment, I explained everything I had gone through yet again. I told her about the facility in Arizona and the tests they wanted to do. Then, something amazing happened. She put her hand on my shoulder and apologized. As she reviewed my records, she commented on how she had done nothing to help me during my previous visits. She told me that, at the time, she was simply uneducated about Lyme. Now, she knew that she could no longer ignore the flood of sick patients coming to her.  Their ailments were perplexing, yet all too common for her to just turn a blind eye to. She had resigned herself to study Lyme and help her patients. Wow! She agreed to arrange for all the tests that I needed. She would call the labs to request the needed kits and would get me the results.  Wow! Wow!

Within a few weeks all of my lab work was completed, and we were packed and ready to go. Before leaving we popped over to my neighbor’s house to tell her a few things. Before walking out, she handed me something. “Use this.” was all she said. I walked out the door, opened my hand, and counted $300. Wow! Wow! Wow! That money paid for our hotel room in Phoenix and my consultation with the doctor. “Oh ye of little faith.” That was me. I had had little faith in the Lord, but look how he had provided. Aside from food, we wouldn’t have to spend one single dollar of our own money for this trip. Is that amazing or what!?

We arrived in Phoenix and made our way over to Scottsdale the next morning. The doctor looked over my blood work and for the first time in nearly twelve years, my blood work was not normal. Lyme was confirmed as was CMV (Cytomegalovirus), and EBV (Epstein Barr). My numbers were pretty high. He discussed a few treatment options and educated me a bit more about Lyme.  He felt as though I was on the right path with my treatment, and encouraged me to stay with my current doctor.  From some of the information she had included with the results, he felt that she was educated and quite literate regarding Lyme Disease.  Then he said something very sobering, “Go home and get your kids tested.” My kids?

I had been pregnant with two of my three boys during this time. He recounted how several studies had shown that Lyme could be passed along in utero. My husband and I looked at each other. We assured him that we would take care of it immediately. And, we did. When tested, both boys showed the presence of antibodies. They had both been infected at some point. I can’t say whether it was a result of pregnancy or simply from being infected by a tick. I have to admit that this was a bit difficult to accept. At that point, both boys did not display symptoms and the infection was not active. In time, that would change, but we’ll leave that for a future post!

Recovery was slow and steady. I’d experience some bumps and minor setbacks along the way, but I continued to improve. I was once again finding normal. Normal is a nice place, and I’d like to stay here for a while! I still continue my weekly treatments but no longer at my friend’s house. Why? Well, the Lord also saw fit to provide the equipment I needed to treat myself at home.

Today, the majority of all of my symptoms are gone. Some of the effects still linger and may never fully go away, but they are minor compared to what I experienced in the past.  My brain is not as sharp as it used to be.  I still trip over names a bit and my short term memory falters occasionally (I’m also now in my 40’s, which doesn’t help).  Through testing my doctor discovered that my adrenal glands are shot from the years of constant physical sickness.  I have a tremendous amount of weight to lose, which has proven to be difficult.  I have become keenly aware and in tune with my body, and I know when something is flaring.  I try to jump on it right away and hit it hard.  I now have a doctor that is educated and advocates for me.

Am I cured? Completely healed?  Rid of all the spirochetes?  I can’t say.  But I can say that the Lord has seen fit for me to experience wellness again, and I praise Him for it.

Over the past few years I have read about and researched Lyme quite extensively.  It truly is a rather “smart” disease.  It’s symptoms mimic that of numerous other diseases and ailments.  The spirochetes have the capability to hide, protect, and change in order to thrive within the host’s body.   The current laboratory tests are weak and highly inaccurate to say the least.  More specialized tests are available, but they are wildly expensive, often not covered by insurance, and unknown to most “regular” doctors.  I believe that Lyme Disease and its coinfections are still a mystery to most.

In my final post, which will go live on Monday, I want to offer up some warnings and information about Lyme.  You yourself must be educated because not every doctor is.  I will also highlight some of the lessons that I have learned along the way,

Lyme Disease Part II: The Depressed Hypochondriac

A continuation from my previous post: Lyme Disease Part I:The Slow Deterioration….

With my health slowly deteriorating over the span of seven years, I had visited my primary care physician more then a few times.  However, seeing his wife in clear distress, my husband requested that I return back to the doctor for yet another evaluation.  I did.  I recounted to the doctor the long list of ailments that had been plaguing me, adding a few new ones like intense stomach pain, often leading to me doubling over in pain in bed, acid reflux, and what I deemed a rather strange problem, sensitivity to light.  Being in the sunlight was pure torture.  I could hardly open my eyes fully.  It felt as if someone was standing a foot away from me shining a flashlight directly into my eyes.

The doctor made his notations, ran some blood work, and told me to come back for a follow up.  At my follow up visit the doctor explained to me that everything was normal.  For the first time I asked if Lyme Disease could be the culprit.  A clear “no” was the answer.  I had never had a bull’s eye rash, and at that time, such a rash would clearly point to Lyme, but without it, doctors were not open to the possibility that Lyme could be present without it.  Becoming slightly desperate for answers I pressed the doctor.  He mentioned that it could be a hormonal problem, but he honestly said he wasn’t sure what was going on.  He handed me a referral to a rheumatologist.   I made my appointment, provided my ever growing health history, and had a new series of testing done.  My follow up visit showed that all of my tests were normal.  There was nothing wrong with me.  He suggested that I return to my primary care doctor, advice that I promptly ignored.

By this time, my body was so tired and my head so foggy, I spent much of my time in bed or lying on the couch.  I had all that I could do to make meals and take care of the kids.  The fatigue was so great that I could no longer walk up the stairs upright.  I begin to literally crawl; I made sure to avoid going upstairs all together if I could.  Old symptoms continued to intensify, while new symptoms continued to emerge.  I would break out into cold sweats in the middle of the day.  My body would shake for no apparent reason.  My face would twitch nearly constantly.  My jaw would literally lock up while I was sleeping, causing me to jolt awake when my teeth would crash together. Noise, not a ruckus, would be too much for me to bear.  Just the sound of my kids talking at the dinner table was too much to handle.  Their laughter was so intense that I had to leave the room.  I couldn’t listen to special music at church because a high note would send me spinning. What in the world was happening to me?

At a well visit for one of my boys, I desperately told the pediatrician what I was going through.  I had an excellent rapport with him and had known him for years.  I trusted him and valued his opinion.  He promptly told me that I was likely depressed.  I asked him if he had ever seen me in a depressed way at any of our visits.  “No.”  I became a bit indignant and told him that I was sick, not depressed, and left.  For the first time, I remember going home from that visit and crying.  I felt as if I were losing control and resigned myself to return to the doctor one last time.

This doctor’s visit was different.  I was rather forceful.  There was no one advocating for me and soon I began to realize that I had better step up.  I demanded that the doctor do something.  He gave me a round of antibiotics, I believe to shut me up, and questioned whether I was depressed.    With tears in my eyes and my children sitting with me, I quietly told him that I was not depressed, I had no reason to be depressed, I was S-I-C-K, and frankly, I was beginning to feel like I was losing my mind.  He walked out without a word.  The nurse entered the room with the prescription in hand and saw me crying.  I’ll never
forget her exact words: “Honey, you’ve got three little boys; you’re just tired is all.  Lose some weight; get some rest and you’ll feel better.”  Like a knife to the heart.

I took the ten day course of antibiotics and a light bulb went off.  Each and every time I took an antibiotic, I felt better, albeit temporarily better, but better nonetheless.  There was something bacterial going on here because if there weren’t, I wouldn’t see any improvement.  For some reason Lyme Disease kept coming to mind.  I feebly began doing research.  I also sought out a new doctor.  I made an appointment with the new doctor.  It was refreshing to have a physician listen to me.  At the end of our time she told me that she believed there was something going on.  She ran a lot of blood work, we’re talking nearly twenty vials of blood.  I know you know what I am going to say next:  everything was normal.  All of it.  From my sugar, to my cholesterol, to my liver, no sign of Lyme disease…nothing.  She told me to come back if I needed to.

Within a few months I noticed that my new symptoms were now scary symptoms.  I could no longer breath normally.  I couldn’t take in a full breath.  I often stood in front of my refrigerator with my head in the open freezer compartment.  The cold air allowed me to breath more freely.  I was dizzy.  I had one episode in my kitchen where the room started to violently spin.  I would wake in the middle of the night shaking.  I’d come downstairs to avoid waking my husband up.  I would proceed to sit on the recliner, wrap myself up and shake uncontrollably.  Inevitably, my husband would come down and hold me.  I could barely talk.  We were both scared.

I returned back to the new doctor and told her about the new symptoms.  She was concerned.  She sent me to a pulmonologist, who told me that I needed to lose weight and exercise, a cardiologist who said that my heart was fine but a bit weak, his solution was to lose weight and exercise, and finally to a neurologist, who, after running an MRI, CAT scan, and a ECG, determined that I had a sinus infection.

With that, I had come to the end of my rope with traditional medicine.  It had been eight years, eight years of no answers and no help.  The only thing that sustained me was the Lord.  Even in the midst of very dark times, He would shine a light.  Now, we prayerfully considered how to proceed.

My brother-in-law who lives about 45 minutes away, told us of an alternative practitioner in his area.  He had been known to help people who could find no help.  I made an appointment.  At this point my husband didn’t even want me driving anymore.  He was right.  So, he took me.  I provided my health history and we spoke for a while.  He explained his method for accessing patients.  It was different all right.  But it wasn’t new age; it wasn’t invasive, and after prayer, I felt that this was the right direction.  After ten minutes the evaluation was complete.  The practitioner looked at me, gave me his disclaimer that he couldn’t diagnose or say for certain what was ailing me, and proceeded to say that it was likely Lyme Disease.  A flood of tears came flowing out.  Finally!  Finally!  Someone believed me.  I wasn’t depressed.  I wasn’t a hypochondriac.  I was sick, and according to him, very sick.  The majority of my major organs were compromised and my brain was a mess.  This was great news!  Strange, I know, but I can’t tell you how freeing it was for someone to acknowledge that I was sick and not crazy.  Now I knew something.  Now I could do something about it.

I began to meet with the practitioner twice per week.  We began by cleaning out my diet, which wasn’t bad to begin with.  We eliminated new found allergy foods and began a detox.  I took some awfully nasty herbal concoctions and a ton of supplements.  He told me that I wouldn’t see results for almost a year.  However, within a few months I was improving a bit.  There was some hope.  At around the nine month mark, I did feel markedly better.  I had been sick for so long that I had completely forgotten what normal felt like.  I wasn’t back to normal, but things were moving in the right direction, for now…

Up next:  Back with a Vengeance!