More info on Lyme Disease

I found the following website http://www.lymeresearchalliance.org/test-diagnostic.html to be very good at explaining some of the issues with the blood tests available for testing for Lyme disease.  Thomas had the ELISA screening and it was negative, thus the lab did not follow with the Western Blot.  Our Naturopath was able to visually show us the actual Lyme's bacteria in Thomas' blood and that coupled with his vast array of ongoing symptoms, makes us think we may finally be headed in the right direction in treatment.  

 This is an excerpt from one of the pages at this site:

* ELISA - The screening test most frequently used when Lyme disease is first suspected. This test only measures antibodies in the blood, which can be problematic.  A two-tier testing program is most often utilized by running a first screen ELISA test and waiting for results.  If positive, physicians will then run a Western Blot confirmatory test. The results of the ELISA can be either falsely positive or negative. Results that are falsely negative may be due to factors including lack of antibody response, testing too early, being on antibiotics or antibody complexing.  Many people are never tested beyond this point and are told they do not have Lyme disease based on this one test.

* Western Blot - This also tests for antibodies and reports reactivity of 10 different protein bands of which 5 must be positive for CDC surveillance (reporting) purposes.  This is generally considered the most reliable test currently available (although it is estimated to be only 80% sensitive even at the best labs).  Many doctors will not consider using this test unless the ELISA is positive, thus missing an important diagnostic tool.

Some Lyme specialists and scientists believe that there are five very specific bands on the Western Blot test that are highly indicative of Lyme disease, numbers 23, 31, 34, 39 and 93.  If any of these bands are positive and the patient is experiencing symptoms of Lyme disease, they may feel treatment is warranted.

If you have been suffering symptoms consistent with those on the attached list, but have been told that your blood tests are negative, do not be deterred from seeking further diagnosis.  Be armed with knowledge and trust your instincts.  You may be one of the thousands who have Lyme disease but have been misdiagnosed.

I also watched an excellent documentary on Lyme Disease http://www.hulu.com/watch/268761. 

Thomas is "holding steady".  We aren't seeing any rapid changes either good or bad this past week. His headache is still mild most of the time and he says he has just a slight dizziness sensation but it isn't affecting his ability to move around and play.  His legs still hurt considerably.  
On Friday afternoon we made a trip out to see our "oil lady" with https://www.facebook.com/wholetotalhealth

 She helped us make up some more calming cream that seems to help Thomas get to sleep at night by massaging it into his legs and putting in on his forehead.  We discussed Thomas' symptoms etc..  She encouraged me to use more of the oil blends at a time. She feels that I wasn't getting enough on him to see a difference.  We also made up a blend specifically for Lyme's Disease to try on his feet. 
 
Friday night (technically Saturday morning) at 12:20 a.m. he came in my room complaining that his leg pain woke him up.  After rubbing his legs and back, he fell back asleep in my bed.  Joe and Chris were in Kentucky for Lacrosse so that was okay besides the fact that at some point he turned himself upside down and proceeded to "kick" me in the face and belly the rest of the night.  Ahh the joys of motherhood; I wouldn't trade them for anything!

On Saturday, my best friend and children came to visit!  Thomas was super excited that they were coming.  I did notice though how tired he was during the visit.  Several times while at our house he went and lay down on his bed. 

Thomas is under the covers while Kyle is trying to peek in on him

He wasn't running around or playing crazy like a typical 9 year boy for sure.  I miss my baby and his energy!  We also went bowling which was lots of fun.  Thomas didn't smile much if at all though. 

Usually Thomas would be the one making crazy faces.  This time it's Tyler!

He told me his legs and head were hurting.  We had a quiet evening after that.  He tried to go to sleep after a massage and reading Calvin and Hobbs but he couldn't get comfortable enough.  So about 8:45 p.m. I called it a night with him and we snuggled together into dream land.  The girls were already in bed after their busy week with summer camps and I was already worn out "playing single parent" for the weekend so it worked out well.

Really hoping to get the leg pain under control.  We've finished week 1 on the magnesium/potassium blend that we were to try for three weeks before re-visiting the Naturopath.  The Lyme's bacteria is very likely what is causing the pain so we need to get that worked out of his system.  We are also hoping to make a family trip to Michigan Adventure this coming week if the weather works out and Thomas doesn't have any set backs.  We stayed home this weekend from Kentucky because we weren't comfortable with that long of a trip with him.  Please continue to pray that he improves and that he can have some enjoyment on our trip with minimal pain. 

Family Doctor and Naturopath

We had a follow-up appointment with our family doctor on Friday.  I was hoping to discuss what we should look into next and how to bring Thomas' some relief from his pain.  I was interested in exploring further Thyroid testing even though the initial TSH levels were normal.  I had read a lot about the need to do a reverse T3 and T4 screening to have an accurate picture of what was going on with his Thyroid.  Every medical doctor he's gone to whether in the ER or a specialist, has mentioned Thyroid but once they hear he's had a TSH test that was in normal range they dismiss it.  Well needless to say our family doctor has literally "washed" his hands of trying anything else with Thomas.  He flat out said that he won't order any more tests; claiming it is not healthy for Thomas to have test after test come back normal, when Thomas himself does not feel normal.  Hello, we get that but so now we tell him "sorry honey, no one knows what is going on so just do your best and suffer through it!".  He's 9!!!!  His recommendation was to refer to Mayo in Minnesota and in the meantime go to a child psychiatrist and put Thomas on Prozac. He also said he could order an ultrasound for the lymph node on Thomas' neck that is swollen and painful and has been for over a month even though he has no other outward symptoms of an infection.  I've read a lot of books that have commented on when the doctors don't find something in the tests they've ordered they turn it over to the psychological side of medicine.  Even having read that prior, I really wasn't prepared to have our family doctor that has known our family for years; come to that conclusion.

I called down to the Naturopath in Shipshewana that we had gone to 3 1/2 weeks prior because I had noticed in my notes from that visit that I wrote that Thomas had a Thyroid deficiency and needed Iodine but nothing was on the slip that wrote out what supplement to use with him.  They were awesome on the phone and were able to get us in yesterday morning to see Dr. William.  Thomas and I had a fun time on our road trip down.  Turns out the reason he hadn't started him on Iodine yet was because he needed to work through the bigger issue and that was the bacteria borellia which is the same bacteria as Lymes.  He put a new sample of Thomas' blood on the microscope and projected it on the computer screen for us to see.  The awesome news was there weren't any "worms" swimming around this time.  His other cells were looking better too.  The doctor and myself were very pleased with his progress.  He said that Thomas "was a quick responder".  He still needs minerals which we are using the mineral water supplement.  The cells that need minerals look like "ghost cells" as their outline is very pale on the projection not bright white like the healthier cells.  Since the bacteria was clearing up, we were able to take him off one of his supplements and start the Iodine for his Thyroid.  We also added a potassium/magnesium blend to see if that helps his leg pain.  If his legs are still hurting in three weeks we are to come back in.  The Naturopath does NOT think the leg pain is just growing pains.  He says the bacteria can also cause the pain and we are still working on making sure it gets completely out of his system.  Dr. William said not to do the Prozac- which we never were going to anyways.  He said it's just what doctors end up turning to when they don't know.  He said the Prozac would just put Thomas in a daze so he didn't know what he was feeling. 

His headaches are much improved and the dizziness is barely present.  Thursday and Friday night he went to bed without tears and enjoyed reading stories before falling asleep.  Last night he was really tired but his legs were bothering.  He asked me to massage them again and then he was able to fall asleep.  Slow and steady progress. He still tires easily.  Yesterday, we went bowling and had ice cream to celebrate.  Hopefully if I don't post for awhile its because things are steadily improving!! 

Neurologist Appointment Day

So we've finally made it to the day we've been waiting for; our pediatric neurology appointment is scheduled for this afternoon.  I thought I'd start the post now and finish later this evening with what the neurologist says.  Thomas has been doing okay the past few days.  I realized I need to clarify that when I last posted, I said that we had gone 9 days without dizziness but that wasn't completely true.  We'd gone that long without any days where he couldn't walk or needed assistance holding on to things in order to move about.  As is common when helping children it's hard to know the exact level to which a child is feeling something such as pain or in this case dizziness.  Obviously, we can tell when it is really bad because he doesn't move around much and he also doesn't talk a lot.  He rates his pain and dizziness etc... on a 1-10 scale for us so we can gauge how's he feel he's feeling.  The dizziness is still present to him ranging somewhere on that scale from 1/4 to 4.  Same with his headache.  This is definite improvement over where we've been but we still need to get him pain free.  His legs continue to be his biggest complaint.  They hurt all day and become unbearable around bed time.  We've been doing massages, baths and different oil combinations but he's not getting much relief.  He consistently rates his legs as a 6 or higher. 
Yesterday, he spent hours filling water balloons so we could have a family water balloon fight and toss when Daddy and Cassie got home from there jobs.  He was pretty worn out by then but he still had fun.

All the water balloons he filled

He also swam in our pool.  He says his legs don't hurt as much in the pool.  Joe said they likely go numb.  That made me laugh- he's so practical.  We just set the pool up this weekend so the water is pretty chilly.  He was pretty talkative yesterday and even did schoolwork including some worksheets.  Today he's quieter but he's enjoyed playing Minecraft with Chris and he attempted a short dip in the pool this morning only to discover that the air temperature felt colder than the water.

So after 2 hours with the nurse practitioner, resident student and the neurologist, Thomas was pronounced completely neurologically healthy.  He was told to resume full activity including hockey on days he feels up to it.   She said we could run so you know what we did when we left?  We ran full speed down the ramp in the parking garage holding hands laughing and rejoicing (and yes watching for any moving vehicles).  On the way home he requested being able to run from the end of our drive (about 900 feet) to the house.  Of course we let him!

Running up the driveway

She did not have any idea what might be causing his headaches, dizziness, leg pain, skin issues etc....  She suggested Vitamin B-2 Riboflavin for headaches and gave us a prescription for a migraine medicine should he ever have one again.  They also recommended exploring acupuncture, massage, biofeedback and play therapy to help him deal with the chronic pain.   

After dinner run in the rain with Cassie

I however, feel like NOONE gets it!  (Except a dear friend of mine who has had similar issues).  Mainly the doctors, they just want to pick him apart symptom by symptom and not look at him as a whole body.  We are missing some piece!  I think the supplements might be helping at least with his headaches and dizziness as they are much less severe currently.  I just keep hoping it will last. 

I stopped at the library tonight after dropping Mackenzie at Youth Group and got a stack of books.  We just got home and she picked up one and read the Title "Lyme Disease" and looked at a few others and said "Wow, Mom have fun reading".  Hear the preteen sarcasm....  

We have a followup with the family doctor Friday morning to begin discussing any further course of action etc....  For tonight we are celebrating his laughter and silliness!

Leg pain and fatigue

 We made it 9 days without dizziness.  Thomas is still really tired.  His calves also cause him a lot of discomfort.  We are still using the supplements recommended by the Naturopath and Young Living oils with him.  He's still on limited activity; no running or sports activities.  Our neurologist appointment is Wednesday late afternoon.  After that the plan is to meet with our family doctor and review what all is going on.  Hopefully, we will have the Holter Monitor readings back too.  We are considering starting the process to get into Mayo and we may have a lead on a doctor north of us that might be able to help. 

 We went to the car show in town today and got some ice cream which he shared with Daddy.  Really tired after and his head hurt pretty bad while walking around up there.  It's hard because he rarely leaves the house any more.  It's typically a once a week outing and its tough on his little body. 

Thomas is  happy now though because we finally decided to go ahead and set up the pool.  So even though there is maybe only an 1 1/2 inches water, Mackenzie and Thomas are happily splashing around with toys.  So glad to see the silly face he made for this picture as the earlier part of the day he rarely smiled at all.  

Tired but not dizzy

This is day 6 (Wednesday) of not being dizzy and being able to walk normally!  Yesterday, he was really tired.  By afternoon we dragged his blankets and stuffed dragons to the living room for a rest time while Mackenzie was at speech.  He was too tired to sit up and play Legos at that point but his headache is very mild and he's not dizzy so that was wonderful!

 His leg pain continues to be very bothersome.  I just started faithfully massaging different oils onto his calves multiple times a day trying to work out any knots etc...

Today, everyone helped clean the upstairs; vacuum, sweep, mop, dust, bathrooms, stove and some windows before Cassie left for her summer babysitting job.  We invited some good friends to join us at the local beach to play in the sand.  After packing enough gear for a week at the beach we set off for the 5 minute ride :-)  When we got there the beach was all blocked with orange snow fencing and a employee was down by the water.  We asked what the story was and learned that while in the past ten years this beach had never had an Ecoli reading over 20 typically it would be 2, it had come back at over 300!!  Needless to say the beach was closed; we are very thankful that they do test the water cause we do not need to add EColi into the mix of what we are already dealing with.  Our Pastor pointed out on Sunday that "Praise is a decision".  Even though we were bummed about not playing in the sand, we were praising God that he had kept us safe by having the water tested prior to us going.  Our friends were able to join us at our house and the kids enjoyed playing with the hose and with water balloons!

Thomas is still doing well after playing outside.  His headache is very mild and he is not dizzy.  His legs do hurt but he has enjoyed playing outside with the RC car.

 We let him ride his electric dirt bike last night and he has plans to that again in just a little bit.
Only a week left until the neurologist appointment.

Matthew 6:27 "Who of you by worrying can add a single hour to his life?"

Matthew 6:34 "Therefore do not worry about tomorrow for tomorrow will worry about itself.  Each day has enough trouble of its own."

The weekend June 6th and 7th

The heart monitoring was easy peasy!  He had a little trouble getting to sleep because he was afraid to curl up and snuggle down with the monitor on but a little extra snuggling from Mom and he drifted into dreamland Friday night.  Saturday was a good day.  He wasn't dizzy and his headache was very mild.  He enjoyed driving our RC car down the driveway and coloring with chalk.  He also had his silly moments that define his personality.  For instance, he took the box from the frozen Lasagna and made it into a shield and used a ruler with dirty socks over it as his sword to attack anyone in the kitchen. 

At one point Cassie looked at me and said "Do we live in dreamland?  Is this possible that he can go back to being his usual crazy self after spending 8 days not being able to walk or barely play?  I have pictures, Mom of him on the floor, scooting on his back!  See?"  And then she pulled them up on her iPod as if to prove she wasn't losing her mind over what we've been through.  I feel the same way, it's like we have two sons and we are never sure which one will be with us and for how long.  Saturdays biggest complaints were leg pain for which we massaged some deep relief oil mixed with coconut onto his calves.  We've been slowly using the rose oil on his "spots" and I put the hair therapy blend on his bald spots yesterday.  It looks like there is a tiny bit of new hair growth on the smaller bald patches near the top of his head and maybe just maybe the spots on his chest and back are fading.

Today he's been quieter and mellow.  He's really tired.  Yawns a lot and has dark circles under his eyes all the time.  We know he's struggling just not sure with what.  Welcome to the world of unknowns with autoimmune disease- right?!  I found a site last night http://www.momtastic.com/health/176501-signs-of-autoimmune-disease-in-your-child/ and it definitely described him.  They listed some common non-specific autoimmune disease symptoms :

• tiredness/fatigue
• dizziness
• rashes
• weight loss
• slight fever
• diffuse joint pain
• dry eyes/mouth 

 It also goes on to say that frequently just a feeling of not feeling right is described. We are really hoping to get some answers to point us towards what is really going on.  The Neurologist appointment finally feels like it's within site so we can discuss any possible head injury or other neurological issues that may be present.   We will be meeting with our family doctor sometime this week to discuss what the next steps are for Thomas. 

We all made it to church together for the first time in over a month today.  In the message today, our Pastor said "God sometimes removes trouble.  God always provides strength."  We have a better understanding of why people often name their long term medical journeys as marathons.  This definitely requires the strength and endurance a marathon would entail and we are blessed to be able to able to draw our strength from the One True God.

 

In the low moments; I can definitely be heard echoing the psalmist in Psalm 22:1 "My God, my God, why have you forsaken me?  Why are you so far from saving me, so far from the words of my groaning? "  And yet I read somewhere that God doesn't move away from us rather it is us that have moved away from Him.  Please keep praying for us!

Holter Monitor

June 5th early afternoon

Thomas is not as dizzy today and has even walked some holding on to things- Yeah! His headache is not as severe either.  Maybe those supplements are finally kicking in ????

We went down to the hospital and got the Holter monitor placed on him.  We were there a bit early and they actually got us in.  We left the hospital before our actual appointment time so that was a nice plus.  The tabs where they attach were very itchy at first but that went away in about 30 minutes and so far no other complaints.  Now I am super happy that he's feeling a bit better today, I just hope that if it something related with his heart and dizziness that the monitor will still pick it up now that he's feeling better.  It's hard to feel too excited that he's feeling better because we've had multiple times of improvement only to backslide right back to barely functioning. 

After we got the monitor hooked up, we stopped in the hospital gift store because Thomas could see A LOT of stuffed animals in the window.  Guess what we found?  A friend for Toothless.  That made the day seem much better to Thomas :-)

Not so happy waiting to go back for the monitor

"Here Mom take Toothless' picture not mine!"

Toothless and his new friend Red Lightning

Helen Devos Children's Hospital

Wednesday- June 3, 2015 Evening

I was super frustrated when Thomas woke up again this morning with a terrible headache and was too dizzy to walk.  He says the dizziness and headache are worse if he's upright so he prefers to stay laying down.  He will still sit up for periods of time building Legos. 

I ended up deciding to drive him up to Helen Devos Children's Hospital ER in hopes of getting some answers and in to see some pediatric specialty doctors who could all coordinate in one place.  Unfortunately, we did not get any answers.  The ER doctor was confident that we had already run any test they could think to check on him.  It didn't matter that Thomas told them his headache was a #9 and that it was obvious he couldn't walk without holding onto something.  They sent us home and told us to wait for the neurologist appointment which is still 2 weeks away!!  They weren't interested in his leg pain, hair loss or skin skin conditions past noting them.  I cried in the ER from frustration and from the let down of hoping they could get us connected with some specialists today.  The ER doctor then recommended that Thomas and I set up counseling.  He said Thomas would benefit from talking to someone about how he feels about not being able to do the things a typical 9 year old boy would be doing.   Seriously!  Our discharge papers included nothing more than notes on following up with our family doctor and a recommendation of a behavioral health clinic (counseling) in town.  How is a mother who watches her baby suffer every day supposed to react?  I've held it together up to this point.  It's heartbreaking telling your child over and over that you can't do anything to make them feel better.

I gave him Tylenol when we got home and set the timer for 4 more hours and gave him more.  Maybe if I keep him on the Tylenol for a day or two the headache will become more manageable and less debilitating.  We are still going to keep trying the supplements from the Naturopath.  In fact, the nurse said to definitely keep him on the CoQ10 to help with his headaches.  The ER doctor said if the headaches were migraines they were very "atypical" and that migraines do not last in this duration. 

I also called and left a message for our family doctor to further discuss what we can do.  He did not return my call yet.  I am not sure if we should go ahead with the heart monitor on Friday or wait until after the neurologist.  The ER doctor said his heart sounded fine.  I really don't want to stress Thomas out anymore than needed as that of course makes him feel worse- as it does anyone!

He's laughing and talking some now but still not standing up. 

He's going to watch How to Train a Dragon 2 with Toothless tonight.  Praying for answers and relief from the pain.

Heart Monitor and Lyme test results

Tuesday June 2, 2015 evening

I was/am having issues with correct time zones and subscription settings.  If you've subscribed to the blog, once a day it will email any new posts I've made.   For some reason yesterday's post didn't come through until this afternoon; so I've added the date that the post is written to the top to alleviate any confusion.

Today has been another very tough day.  Thomas has rarely walked.  He isn't even trying- says he's just too dizzy.  He does crawl or scoot around on his back.  He mainly played Lego's again today. He also enjoyed snuggling with Toothless; the dragon.

Last night, he didn't want it but he needed my help in the shower.  Poor guy!  Then at bedtime the pain in his head and legs was so great that he couldn't get settled to sleep.  He refused Tylenol.  He's says it doesn't help.  Around 10 p.m. we put him in our bed to try to get him to sleep.  This morning he couldn't get out of the bed without help.  Everything hurts!

 Our doctor ordered a 24 hour Holter Monitor for him.  We go to the hospital this Friday to have it put on and he will wear it for 24 hours straight.  It will record his heart beat and note any irregularities.

As I am typing this, Thomas has made his way into the computer room with his sisters, who are playing Minecraft.  I hear lots of laughing and even some screaming about portals and wolves.

 Maybe just maybe we are turning a corner and the supplements are starting to work....

I was encouraged through music today.  One song that helped was "My Hope Is In You" by Aaron Shust.  I am holding strong in the hope I have in our God who is an amazing healer. Psalm 130:5 I wait for the Lord; my whole being waits and in Him I put my hope.

We just (8 p.m.) got the results back from the blood work and he tested negative for Lyme Disease through the Elisa test.  I'll post more on the reliability of the tests.

Lyme disease???????

So Lyme Disease has come up in many discussions over the years with friends but we don't remember Thomas ever having a tick bite him.  He's had them crawl on him and we've just plucked them off and squashed them.  We don't remember one ever really being stuck on him so we've always dismissed the notion.  Apparently the bacteria the Naturopath saw in his blood is the same one for Lyme disease.  So after I shared with our family doctor what the Naturopath had found he ordered a Lyme antibody test for Thomas.  It's a two part test the first is called the ELISA (Enzyme-linked Immunosorbent Assay) and if it is positive then they will follow up with a Western Blot test.  The results will likely take several days.  Lyme can apparently also be transmitted by fleas, mosquitoes, spiders and mites as well as ticks.

You know you've had too many blood draws when the technician knows you

Thomas continues to be dizzy and suffers from a headache.  He's also very tired and his legs are bothering him.  We've noticed over the last year that he gets more tired easily.  We used to tell ourselves it was just because he was growing.  After the blood draw, we went to Build a Bear.  He had some birthday money from Aunt Kelly and Uncle John and he wanted to get a new pal to love on.  This trip was the first he'd been off our property in 9 days.  We had a good time and he was able to walk fairly well.  By the time we were home he was extremely dizzy and has reverted to crawling.  He's still enjoying building the Legos my brother is letting him borrow. 

Selfie outside Build A Bear

Meet Toothless

The trip to Build a Bear really wore him out but he was glad he got to go.

Joe and I are really tired.  We've been trying to help him get better for a little over 5 years now.  We hold to a trust in God; who knows ALL things and comprehends ALL things but I would be lying if I didn't admit to feeling defeated and frustrated.

                                                             

Some snuggling with Cassie and Toothless