Well here we go! Our appointment came and went, and here I am, trying to piece everything together so as to comprehend what is to come.
First off, we were an hour ahead of schedule. That is the tricky thing when you are attending an appointment in a different time zone! We called back an hour later, only to find the doctor running late. So, we waited 45 more minutes for her call. But you don’t want to hear all this.
The juicy details came rather monotonously. She listed off ALL of the 35 tests she took that came back negative (I think to make me feel better about what was to come), lacing in only a few positives (tests, that is). The summary?
I have Lyme Disease. (Are you surprised?)
I also have Bartonella, a co-infection. My test for Babesia (another co-infection) came back negative, but the doctor thinks I still may have it based off of the many symptoms I display, and it’s tendency to hide from the immune system, providing a false negative (which means, it may pop up later, once other things are healed). They found Biofilm in my body, which is not only protecting the Lyme BUT...(cover your eyes if you are easily grossed out) aiding an intestinal parasite as well. Are you totally disgusted? I know I am. I actually don’t know how to nonchalantly lead into this next sentence, but here we go: I have low progesterone, which we already knew based off of my NFP charts, and that it is being caused by the Lyme. The tissues around my thyroid are out-of-whack --those are fancy medical terms, for those of you who don’t understand them, send me an email ;); yet another contributor to my fatigue.
None of the genetic factors that can make it especially difficult to treat are present, which is great news. The activation of clotting is high in my blood though, blocking the capillaries, creating hiding places for the Lyme spirochetes, and depleting my body of oxygen; consequently causing the seizures; also, affecting my circulation and ability to eliminate waste (and in turn, toxins) very well; and last, and but not least, contributing to my pain levels. Oh yeah, and those weird dreams that I couldn’t wake up out of? They weren’t hallucinations: they were a type of seizure. Strange, isn’t it? Anyway, the result of these...results (ha!) mean I get to learn how to give myself shots of Heparin twice daily, until I am completely better. And while this still freaks me out, I have had roughly 6 weeks to process the idea, so I am slightly more accepting of it (key word being slightly).
My vitamin B12 is also so low, so I have to get injections in my butt three times a week. My mother-in-law was all too ready to offer to do that for me...funny (she later claimed it was from all of her previous nursing experience, but I still think it might be payback for all of my crankiness!) My folic acid gene is mutant (sounds cool, eh?) which means 50% of my cells aren’t working as they should to heal my body. The remedy is a supplement which bypasses the gene problem to provide my body with what it needs to heal. My adrenals are bottomed out, which causes all sorts of problems, from healing very slowly to severe fatigue. Another test showed I have no good bacteria in my body, a small amount of yeast, and low levels of bad bacteria. All of which aren’t as bad as they could be, and treatable.
And lastly, my body is carrying around viruses, including high levels of Influenza A, something called Coxsackie, and a mild case of Mono.
All along the Doctor would say one result, and then, “that’s where your pain (and/or fatigue) is coming from,” or, “that is what is causing you so much pain” over and over again with each new result. She actually said there was no question as to why I can’t get out of bed anymore. And as bad as all of this sounds, it’s incredibly validating. Like many other Lyme patients out there, I bounced from doctor to doctor having the severity, source, and even the existence of my symptoms questioned.
My supplements and antibiotics were tweaked, new ones were added, and then the question I can’t stop asking came: “what about IV antibiotics? When are we going to start those?” She said that we should give the heparin two weeks to thin my blood first, so the antibiotics could perform at their finest. Just as she began to reassure me that she believed it was the best choice, the fear began to kick in, and make me second-guess myself. I decided that my desire to get better was larger than my fear, and dove in.
So that is the plan. We won’t treat for everything at once, of course. We will kill off a few things at a time, making sure my blood is thin enough to efficiently get the antibiotics where they need to go, that my body can handle the treatment, and that I have the vitamins, minerals, and supplements to keep my body strong enough to fight this off. She said she is expecting the classic Lyme to be able to get treated in one year (vs. the original projection of two!) And even though I have all of this other garbage going on in my body, it is less complicated to treat than some of the initial possibilities, so the timeline for those might be shorter than we were initially looking at as well (Praise God!)
Matt had his appointment next. The good news first: he does NOT have Lyme! (I thanked God out loud for that one!) He does, however, have an even more serious case of Bartonella than I do. One of the tests showed that he has had it for more than two years; so, it may have been caused by a cat scratch when he was younger, and it wasn’t until now, when put under all this stress, that it reared its ugly head. The main symptoms: high levels of anxiety, and low levels of energy, which cause problems with concentrating and organisation. He also has huge amounts of Biofilm protecting it. He is going to require 6-9 months of medication (antibiotics and supplements), which will cause Herx reactions in him as well (flu –like symptoms, and/or the worsening of what he is already experiencing: anxiety, lack of energy, and insomnia); to what degree, we don't know.
As for Jack, our sweet little Jack...his blood test to Germany failed to get sent. So, we wait another 6 plus weeks to get the absolute confirmation; BUT, all of the tests that the Doctor has used for years to find markers for Lyme showed nothing; as did the blood work we sent to the States initially. So, while I am not absolutely sure, I have strong hope that we have that blessing headed our way. It was recommended that he get referred to an ear, nose and throat specialist as his tonsils were severely enlarged when we were down in the states, and there was no reason they could find for it. Tests did find four different infections in his GI tract though (including E.Coli and a type of pneumonia); I asked how he got this, and the answer was: from being a baby; crawling on the floor, having a dog, putting toys in his mouth, people not washing their hands before preparing his food, etc. In addition to this, there is a problem with his bile functioning properly (making his poop too acidic, and causing him lots of painful diaper rashes). He isn’t digesting fats properly either. So, the plan for Jack is three months of antibiotics which will simultaneously kill all GI tract infections; a probiotic to add good bacteria to his system; an immune system booster; and finally, some vitamins and supplements to fix his bile issues. Until all of this is cleared up, he is to hold off on getting his 18 month vaccination (she said that anyone with a virus should wait until it is cleared up before they get vaccinated for anything anyway!)
We will receive our prescriptions by mail sometime next week. Matt figures it will take some time to get them processed, which means by the time we get the heparin two weeks underway, it will be closer to Christmas when we start the IV treatment.
I am scared; I feel as though I am not ready to jump into this right away (for once in my life I am grateful for processing delays!)
I also feel a lot of peace about things. That this is good news; that we are following the right path.
I wonder what Christmas will be like for our family this year? 2010 was a time of waiting for our baby to be born; 2011 a year of seeking answers to my health problems; And, as painful or difficult as it may seem at the time, I think this upcoming year of 2012 will be a one of healing for me and my family. Please pray with us as we grow through this.
Thank you for all of your prayers and kind words, as we entered into the unexpected, with a bravery not our own. We couldn’t do any of this without the support and love we have poured down on us each and every day.
“ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Corinthians 4:16-18
