What Now?

As we move from accepting this diagnosis of Lyme Disease to treating Lyme Disease, I find myself still lost in the internet trying to make heads or tails of all the information there is and which way is best to approach this.  Do we start simple and hope for the best? Who do we see to do these treatments?  What is the success of these treatments?   Wow, and I thought confirming a diagnosis was difficult.  😓

The most common treatment?  Antibiotics.  But already here we read so much conflict.  Some go with just a dose of Doxycycline, others say two drugs are needed (commonly Doxycycline and Amoxicillin - which Rebecca is allergic to) and still others have a whole concoction of antibiotics.  Initial standard treatment is about 6 weeks, but then some say 8 weeks and so very often once a person quits, the symptoms return, and they have to start up again for another couple of months.  I read of many cases where people end up on antibiotics for one, two or more years. (gulp)!

Herbal treatment is another option.  But again, mixed results.  This has more appeal in that it is not as hard on the body as antibiotics.  But its definitely hard on the pocket book, and with our long track record of being exception to medical rules, it's a tough one for us to justify.  Rebecca is currently taking some herbals, with no effects.  Not to focus on money, but just so the reader understands, that's almost $700 after 2 appointments and supplies.

Why is this all so hard?  Why does everyone have a different treatment?  Why are many of these treatments not working to cure on the first attempt?  The simple answer: the Lyme bacteria is extremely pervasive and resilient.  Lyme bacteria can change form and become a cyst. In this form it is protected from being killed off by the immune system and therefore can survive dormant for long periods of time.  The bacteria can also penetrate cells and enter the area inside the cell wall and this too allows it to hide from the immune system.  The bacteria can spread quickly and are also able to survive in biofilm forms.  Not all antibiotics can penetrate the cell walls, or kill the cysts or get at the bacteria in the biofilm and so this is why a variety of antibiotics are needed.  Even with all these different antibiotics in the system, there still seem to be many patients who do not recover after the initial 8 weeks … and go on to months or years of every changing antibiotics, and all the others supplements to try offset the effects of the Lyme and the damage of long-term antibiotics on the body.

As I mentioned in my last post we are thinking to wait until the summer to go ahead with treatment.  Deciding on a treatment and making a plan of action has been a hard decision to come to with many factors weighed out.  Rob and I have spent many hours in discussion on top of my gazillion hours of internet research.  Rebecca has been slowly learning and listening and Marietta has been sure to chime in her opinion.  This afternoon we sat down together (minus Matthew since it's all too complex for him) and discussed all that we have learned and tried to come up with a plan that Rebecca feels comfortable with.

After all of our reading and also talking to a couple of Lyme patients who have tried antibiotics, IV antibiotics/therapy, herbals and whatever else they could find only to still continue to battle with LD, we are strongly leaning towards the hyperbaric oxygen treatment (HBOT) with Rebecca.  One of these Lyme patients has done this treatment and is currently doing well after it.   She has not been in remission long enough to truly confirm that this treatment works, but at this time she is doing better than she ever has with any other treatment .. and she has done many!

The treatment plan that we are currently planning to do would take us to Edmonton, Alberta to the Canadian Hyperbarics Clinic and Apothec Wellness Clinic.  Both of these clinics operate together as a team to fight LD at the Edmonton General Hospital.  It is an 8-9 week intense treatment plan, that involves being in the hyperbarics chamber EVERY day.  Within two weeks if there has been a herx reaction, then we know that Rebecca has LD and/or co-infections.  After two weeks if there is no reaction she will continue treatment but be considered “suspicious of LD”.  After 4 weeks, if there is still no reaction she will go from suspicion to “no LD” and will be discharged from the treatment plan.  

If Rebecca does herx we will have confirmation of LD and will carry on with the HBOT as well as treatment by the Apothec Wellness Clinic.  The Apothec Wellness Clinic supports the work of the Hyperbaric Clinic by helping the patient through the herxing and healing process.  On top of being in the hyperbaric chamber every day, once a patient has begun herxing the Apothec Clinic then steps in to help with detox and supporting the gut with supplements, vitamins as well as whatever other therapies are helpful -  like massage therapy, infrared sauna, full body hypothermia, PEMF (Pulse Electromagnetic Field)… all things I haven’t even had a chance to look at or try to understand at this time.

Because this treatment would likely take us to Edmonton, we are trying to wait until the summer holidays to begin treatment, but this will ultimately depend on how Rebecca continues to feel.  If at any time things begin to get worse, then we would start sooner.   We still have other decisions that we haven't come to complete conclusions on, such as whether to do some more testing, or whether to try a herbal combination (samento and banderol) to see whether it makes her herx and help to confirm the LD diagnosis.  While this could help us, herxing could really stir things up and make it harder for Rebecca to function and she would really like to attempt to stay on track with her school.   So we are still sitting on the fence on some of these thing.   Besides schooling, another reason we feel waiting is good is because we can see how effective this treatment continues to be on the Lyme patient that told me about it.  

There is also a bit of a practical reason for waiting until the summer.  With Marietta still recovering from her concussion last January, it is a bit difficult for me to leave as she needs to be driven to school each day and to appointments.  And, dare I admit it, Matthew has been having a lot of appointments lately as well for what they believe is vestibular neuritis.  Leaving during the school year just makes it more difficult for the other kids and waiting makes it easier to hopefully work out some of these issues and appointments in the next few months.  And then of course, there is the financial aspect that we have to work out.  It's a big chunk of change, but in the long run it's probably the most economic treatment.  For $17,000, there is a complete package of HBOT, herbals, vitamins, massage, etc. Another Lyme patient has told us that of all the treatment she has done, this one was the cheapest, and most effective.  

There's more to be said about HBOT, but it's late, and I need to get some sleep.

Thoroughly Confused

I’m tired of reading.  Actually frustrated with all the reading is probably a better way to put it … and frustrated with myself that I keep reading even though all I do is confuse myself more.  Each time I get up from the computer I say I’m not reading anymore … my hours and hours and hours of reading have not helped me to feel completely confident in a diagnosis of Lyme.  Each individual presents  different symptoms, each doctor has different ways of diagnosing, each test has its issues of inaccuracy, each treatment is different for each person.  There is nothing standard about Lyme Disease!    I want to close the book on the idea and say “no, she doesn’t have it”, but I know my conscience won’t allow it because there are too many things that say “yes, she does have it”.  I really just want a nice clean test like we had when James was diagnosed – a urine test that confirmed, a blood test that confirmed and then DNA test that finalized the diagnosis.  That is not to happen with Lyme Disease.

Ultimately we have to make a decision on whether this is what we feel Rebecca has.  We have consulted with five Lyme experts and overall we are hearing the same thing with each one: the test indicates her immune system is suppressed and Lyme or a Co-infection is definitely worth considering.  Can any of them say “yes, she has Lyme for sure”?  No!  Do all of them say there is a good chance she has Lyme or another tick-borne disease?  Yes!  So why can’t I accept that?  Because every one of them has different reasons for saying so, and ultimately, every one of them is a private practice that makes money treating Lyme patients and we have to weed out the money makers and the sincere doctors.  All in all, we tried to find reputable doctors who are experienced in Lyme.  And then on top of the experts, I have chatted with others with Lymes and on a Lyme Support Group … my brain is about to explode trying to keep the info straight.

We still consider the idea of more testing.  Our original testing was specifically for Borrelia, not co-infections.  It had been recommended to us to do co-infection testing right away, but at a cost of over $1500, we chose to just do Lyme Testing, which was expensive enough at $775.   We hear that co-infection testing isn’t always accurate (there’s a surprise), so it’s a tough call on whether to spend more money.  We have also been given some recommendations on some other possible tests that might give us more information on the Lyme, including testing at a different Lyme lab to see how their results compare.  We could spend another $1500 on testing, but in the end we’re still told that tests are just a nice tool and diagnosis is confirmed by clinical symptoms, even when a test is negative. 

What we consistently hear is that the only way to confirm this diagnosis is to begin treating.  Treatment will induce a Herx (official name Jarisch-Herxheimer), which is a die-off reaction.  This mean there will be a temporary worsening of the symptoms of Lyme disease as the Lyme spirochete (bacteria) is being killed off, creating inflammation, fever, muscle and joint pain, headaches, cognitive impairment, and a general worsening of the underlying symptoms.  The more spirochetes that die, the stronger the reaction while the toxins clear the body.  So on the one hand it makes sense to just put Rebecca on numerous antibiotics (the standard treatment) and see what happens, unfortunately it’s a bit more complicated than that.  

If Rebecca has Lyme Disease, it is late stage Lyme Disease (also called Chronic Lyme), which means that it has been around for more than six months (our suspicion is it’s been almost 5 years).  Antibiotics work well for acute Lyme - when you treat right after a bite - but not so great for late stage Lyme.  Many people with late stage Lyme end up finding that as soon as they stop the standard two months of antibiotics the symptoms come back - they have not gotten rid of the Lyme.  What happens then is that most are put on more antibiotics, or different antibiotics to try again and often we hear that people end up on antibiotics for years.  And then still some are not cured.  While antibiotics seem to be the most standard and common treatment there are other options, we have heard about herbal treatment, hyperbaric oxygen therapy and one doctor even suggested hemp CBD.  None of these have a perfect success rate.

This leaves us where we are today.  Confused, unsure, but moving forward.  We feel there is a very high probability that Rebecca has LD and so we need to go forward with that diagnosis.  I will write more about what our plan is next time.  For now, suffice to say that we will likely not begin treatment until the summer so that Rebecca can hopefully make it through this school year.  If at any time Rebecca feels she is getting worse and can’t keep going we will start treatment earlier.  In the meantime we will not abandon the regular medical system but will carry on seeing our doctors and looking for answers that way.  If they can find another answer or prove to us that this is not Lyme then we will be quite happy to have another diagnosis, but if nothing is forth coming by June then we will begin treatment for LD.

At this point we try to take comfort in the fact that while Rebecca is not feeling great, she is still appears relatively healthy and hopefully this means she is better able to fight this off and we have caught it before it does irreversible damage.  While my mind tries to work through all the human logic of why our family has to deal with this, how we’re going to deal with this, etc, I have to take the time to remind myself of Who is in control and where I should really be getting my comfort from.  God is always there, He has a purpose for all things and He will uphold us also through this as well.

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. “  Isaiah 41:10 

Diagnosis

Since August we have been throwing around the idea of Lyme’s Disease (LD).  I would look at Lyme information and dismiss it, then come back to it again and put it off again.  The cases of LD that I’ve heard about have much more physical ailments than Rebecca, so I just didn’t think this is what Rebecca had.  But I decided to do a bit more reading, inquiring and learning and was slowly learning that Rebecca’s symptoms did fit into the LD category … but LD covers pretty much everything and is called “The Great Imitator” because it is often mistaken for other disease, so I wasn’t too convinced.  But in the back of our minds we kept thinking that maybe LD was what she had and we had just caught it early enough before it got as bad as the other cases we had heard about.

In August I had Rebecca fill out the Horowitz Questionaire for LD and she scored 36 (which suggests a possibility of a tick-borne disorder) … she has since filled it out three more times (in November and January) and each time she needs to add more symptoms, which increases the score.  Reading about LD made me begin to question some things we had just dismissed as unrelated or “growing pains” in the past year.  From time to time Rebecca would complain about pain (bear in mind she doesn’t complain too easily), one time in her knee, then after a week or so she’s quiet again and a little bit later she complains about her back, or her jaw (we thought her TMJ had returned), or her neck.  Reading about LD made me realize that this could be classified as migrating pains and that stiff and sore neck is a symptom of LD.  For a period of time during the summer Rebecca complained that she couldn’t get enough air and that her chest hurt. At the beginning of her dizziness she also complained about her vision doing funny things.    Interestingly, people with LD are often misdiagnosed with EBV (aka Mono) and/or Chronic Fatigue Syndrome

The reality is that we live in a tick infested area (ticks moved full force into this area about 6-7 years ago, until then I had never seen a tick in my life) and in the back of our minds we could not shake the fact that about 4 ½ years ago, on April 18, 2013, when Rebecca was in Grade 5, I pulled a largely engorged tick off Rebecca during the middle of the Music Festival.  Knowing little about LD at the time we did not keep the tick to be tested.  Exactly one month later, on May 18, 2013, Rebecca woke up that Saturday really sore and as the day went on she was unable to walk and we brought her to Emerge.  Not much was accomplished at Emerge that I can recall.  We had to go home and come back again on Monday to have some further testing done.  Over the weekend Rebecca slowly improved and by Sunday night was able to walk again.  When we returned to the hospital on Monday I insisted that we have Lyme testing done.  The doctor was not in agreement, but I would not give up and so they did the testing.  We were told it came back negative, although I never seen the actual report.  I did not realize at that time how inaccurate those tests were.  We followed up with a rheumatoid doctor, but with her symptoms gone and not reappearing the whole episode was soon forgotten.

For years Rebecca has struggled with fatigue, always needing a lot of sleep, being frustrated by how tired she was and how no matter how much sleep she got she never felt better.  We had begun to accept this as just being Rebecca and had always assumed it was part of the fact that she suffers from depression.  Now we’re not so sure anymore that this is the case.    Other little things that we just accept as Rebecca also started to fit into the picture, like how much hair she is always losing … I can never understand how she still has so much hair on her head when I see the brush loaded with hair every time she brushes it.

As we looked at these different possibilities, we still put off testing for LD … or should I say “really testing”.  We had our pediatrician order the Canadian testing, but we knew that it would not likely tell us anything since the Canadian testing is known to be inaccurate – and it came back negative as we expected.  We researched on where to get more accurate testing done and learned that Arminlabs in Germany was the most up-t0-date as far as testing goes.  We have since learned that Igenex in the US is doing the same testing now, but in order to have testing done there you have to have your doctor sign the requisition.  Arminlabs does not require a doctors signature.  Since testing for lymes would cost us $775 we held off until we had exhausted all the possible tests we could think of to give us an idea of what was bothering Rebecca.  As we sat on the fence we finally decide that we had to spend the money and do the test so that we would have peace of mind that we had rules out Lyme’s Disease.  It was recommended to test for co-infection that often come with LD, but since that would cost an additional $750, we decided to stick with just ruling out LD. 

On December 4, 2017 we took Rebecca to have her blood drawn and shipped it off to Germany.  For the next 5 days Rebecca felt more sick, her cheeks were pink again and she was constantly checking her temperature with the thermometer thinking that she had a fever, but each time it registered fine (which reminded us that she would do this when she was first ill in March/April as well). 

We were impressed with how fast we had the results, they were emailed to me a week later and thus began some even more indepth reading as I tried to understand what they were saying.  One part seemed to say she did not have LD and the other part said she was positive.  For the next few days I search through the internet to try find an answer I could be confident in, but I couldn’t find it.  So I moved on to trying to figure out who to see who could give me an answer I could be confident in.  This in itself is a huge task.  The reality is that Infectious Disease doctors do not believe in Chronic Lyme Disease, so we are stuck going to private practices.  The further reality is that you have to weed through which of these private practices is truly interested in the patients’ health and not their money.  The biggest reality is that LD is not something you want to fool around with, if that is what it is then it is only going to get worse with time and so finding good treatment is important, but everyone has a different idea of what good treatment is and all this biology reading if frying my poor brain.

We found a doctor in Richmond Hill and got an appointment before Christmas.  She felt that Rebecca’s immune system is suppressed and she could have LD due to the positive band (39kDa), but it was her opinion that it was more likely a co-infection/another tick-borne disease and so we should try to get testing done for co-infections, or it could be that a co-infection is covering the LD and once it is eliminated we will see a stronger LD presence. She gave us a list of co-infections to test for and suggested we see our doctor to try and get them done through OHIP.  Rebecca’s pediatrician gave us a referral to an Infectious Disease doctor, and all my reading tells me that there is no point waiting for them to help us because it’s not going to happen.  Back to the drawing board we went to try and figure out how to get this testing done, which led to more reading as we still did not have a conclusion on whether this is LD or not. 

Over the Christmas Holidays I closed my computer to all medical research and took a much needed break from overdosing my brain in medical jargon.  But unfortunately my taking a break does not mean that Rebecca’s symptoms took a break and so as soon as the holidays were over I was back at it again.

Through a couple other Lyme’s patients I got connections to some good LLND (Lyme Literate Naturopath Doctors) to get a second and third and fourth opinion on what Rebecca’s tests all indicate.  I am so thankful that these doctors were willing to answer my emails or call me to talk about things.  The end result is that we have now communicated with five doctors and they each say that the blood work shows Rebecca’s immune system is compromised, that she has a positive testing for borrelia (official name of the lyme bacteria) band 39 kDa and that her history and symptoms are very suggestive of LD – especially the paralysis she had in 2013 and her migrating pains. 

Our reading has told us that testing is a nice tool, but for LD it is not always accurate.  They are getting better at testing and using various ways of testing, but they just can’t rely on testing at this time.  A couple doctors have suggested more testing options we can do, but they will all say that LD is a clinical diagnoses based on what a patient tells them.  Regardless of what the numbers say on the testing you still have to interpret the data and it boils down to clinical interpretation and the skill of the doctor you see. 

At this time we have been told that Rebecca has Lyme’s Disease and the only way we will confirm this is by starting treatment and seeing how she reacts.

Background

At the end of March 2017 Rebecca started coming home looking completely exhausted with rosy cheeks and not feeling well.  We assumed she was coming down with something, but being the stubborn girl she is she continued to go to school each day.  She began to feel dizzy each day and by noon hour each day felt like she was going to faint.  She was extremely tired and her eyes started to do some weird things where she felt like she had tunnel vision.  She came home one day, looking rather unwell and I asked if I should make a doctor’s appointment for her, to which she replied “Yes”.  For Rebecca to respond something other than a shrug or  “Idunno” or “Doesn’tmatter” (yes, there are no spaces in those words because these are famous words in her vocabulary that sound like one word when she says them) was a very obvious sign that she was not feeling well.

Our family doctors was concerned about these symptoms and ordered some blood work and gave us a referral to see a pediatrician ASAP (within the next week).  When I messaged the family doctor a few days later to let her know that Rebecca was now having severe pounding headaches on the top of her head, she advise if we couldn’t see the pediatrician in the next few days to take her to Emerge.  We did get in to see the pediatrician, who did an assessment and felt there was no reason for neurological concerns or to do a scan, she ordered some more blood work, mostly looking for Mono (EBV) due to the extreme fatigue that Rebecca continued to have.  A couple weeks later we were told that Rebecca’s blood work came back showing she “possibly” had Mono, even though the only symptom she had that fit the Mono description was the extreme fatigue.  Mono usually starts off with a sore throat, fevers, swollen lymph nodes … basically a cold/sickness … Rebecca had had nothing of this assort at any point in the previous months.  Our pediatrician said that sometimes people just don’t start off with the classic symptoms.   (For those more medically savvy, almost all of us get EBV, usually during our childhood and it barely is noticeable, it's when you get it when you're older that it has more long last symptoms.  Therefore Rebecca's blood work was considered "possible" EBV because it will continue to show up in your blood work for the rest of your life if you have already fought it before.  Rebecca's blood test did not so much show an active EBV, but if symptoms match you can therefore diagnose as having EBV)

Over the next couple months Rebecca focused on resting.  She stopped teaching piano and all extra-curricular activities and focused on sleeping and keeping up with school.  She would take days off of school to get extra rest and help her get through the week.  Research of the EBV blood test results further convinced me that this was not Mono we were dealing with and so after a couple months of lots of rest and no improvement we returned to the pediatrician in June to ask for more testing.  Over the following months more blood work was done, a CT scan, holter monitor, diabetes testing, blood pressure monitoring, Canadian lyme testing, a diet change (grain, sugar and milk free – which made her feel worse) … but nothing was showing up.  Rebecca took the summer off and did not work, but even then she did not improve.  We had thought maybe the stress of school was causing her problems, but when nothing eased over the summer that diminished our thoughts on stress/anxiety. 

School started again in September and Rebecca returned to school with the diagnosis of Chronic Fatigue Syndrome (in other words, the doctor had no clue what it was, but acknowledge she wasn't feeling well).  Since physical exercise exhausted her and made her feel worse, she was advised by the pediatrician not to do Phys. Ed. and we worked out a reduced load for her to still be able to get her credit.  We were concerned about how she would manage returning to school, but it seemed with time she actually seemed to be doing better.  She was able to go to school every day, she no longer had the pink cheeks very often and after a few weeks began to take up teaching some of her piano students again.  Rebecca doesn’t say much, so from the outside looking in she appeared to be doing a bit better.  She still needed tons of sleep, but she could handle some extra activities again.  But if you directly asked her how she was feeling then you would realize that she wasn’t feeling much better, she had just gotten used to it and was learning how to manage with how she felt.  The one thing that had changed since the original symptoms was that she no longer was dizzy as much, but instead has constant brain fog that made it hard to concentrate or focus.

We waited until the end of November for the results of the last test we had put our hopes in finding answer from – a Sleep Study to see if she had Periodic Limb Movement Disorder (PLMD), but this came back showing she sleeps pretty good, there were some issues with the amount of air she takes in at times, but overall there was no PLMD or sleep apnea.  We do know that Rebecca twitches/jerks in her sleep and the PLMD often doesn’t show up on Sleep Studies, but we didn’t think her twitching/jerking was that bad to be causing her problems.

We had run out of ideas of what to test for and our doctor wasn’t helping us either.  She left it as Chronic Fatigue Syndrome and told us she would send a referral to a neurologist to see what he thought.  An MRI was also ordered.  We decided to try a naturopath/nutritionist/herbalist next, but Rebecca’s currently taking lots of different herbals and we’re not seeing any change.  In the meantime we did some other testing that might have provided us with an answer.

Introduction

It’s always good to introduce who is being talked about. 

Rebecca is the main character in this story.  Rebecca is 15 years old and currently in Grade 10.  Rebecca is somewhat shy and quiet, although when with her friends she can project quite a bit of volume and energy.  Rebecca likes school, loves to read, and enjoys music.  She has completed her Grade 8 Royal Conservatory for Piano and teaches piano lessons as a part-time job.  Rebecca hates anything that draws attention to herself, so being sick and this blog are not really her thing 😕

Other characters you will find in this story are Rebecca’s parents – Rob and Stephanie (that’s me 😊 ) and her siblings, Marietta and Matthew.  Rob works as a mechanic and truck driver for a company that moves modular office buildings (oversize buildings).  Stephanie is a stay-a-home mom (or would it sound better to say: cook, house cleaners, nurse, doctor, taxi driver, financial adviser, domestic engineer, etc??).  Marietta is 17 years old and currently trying to complete  Grade 11, after suffering from a concussion that has set her behind in school (that could be a whole separate blog again).  Matthew is 10 years old and in Grade 5.

So that covers who were are, now I can move on to why I’m writing.

Blogging Again

This blog has been set up mostly to provide updates about the progress of Rebecca’s health. I hope to be able to provide information about her treatment and how it affects Rebecca and our family. Although much of the blog will focus on Rebecca, we don't want to forget about how she functions within the rest of our family and so I'm sure you will also be able to get a general idea of how the entire family is doing.  I'm hoping by blogging I can keep a diary for ourselves, Rebecca and others to see the ups and downs of dealing with a complex disease.

It was over 11 years ago that I sat down to start writing my first blog – James’Story, using pretty much the same words as above.  Now it seems that we are embarking on a new medical journey and so I will try again to do this writing thing. Now-a-days Facebook is usually the place to write, but I tend to like detail and become long winded and Facebook people like short and to the point … so it seems that blogging is the better option for me.  Blogging also makes it easier to put the information into a printed book later on, which is what we did with James’ Story.  It always amazes me how much detail we have forgotten from those days when James was sick, but how reading his book, full of so much detail, bring us back in time to those days so many years ago, giving a feeling like we are right back there going through it all over again.

So here we start again …