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