Our Health Care System is Broken and It Definitely Can't Fix My Herx

It has been a week and 1/2 of hell so far. After 3 nights of horrific searing, burning nerve pain and complete icy-cold numbness in my arms and hands, some in my feet and ankles but without the pain, I finally caved and went to Urgent Care. These 3 nights were some of the longest and most torturous I have experienced to date. None of my pain meds even touched what was going on in my body.  Every time I would nod off my arms would go numb then my nerves would start feeling like someone had taken a torch to them and was burning the crap out of them. I even tried my old trick of binding my arms straight and propping myself up with pillows to sleep upright but nothing I did alleviated it except to stand up. Well, after 3 nights you really don't have the energy to even do that anymore. I had debated at 3am the night before if I should go to the ER but decided against it because I didn't want to end up paying good money only to have them completely treat me like shit and do nothing to help me. I am so glad I went (that is sarcasm there) because I spent 3 hours, surrounded by coughing, hacking people who were sick from the flu only to be told they couldn't help me and I would have to go to the ER. The irony was that the good doctor, who was assigned to my care, was the same one I saw about 6 months ago who wrote, “Drug Seeker”, on the top of my visit summary, as the #1 reason of why I was there visiting the UC. I was absolutely stunned and irate to see this nut job but it gave me an opportunity to tell her off. When she came back to discharge me I reminded her of what she did. She tried to wriggle out of any culpability and I told her that her that, 'by dismissing me and writing a falsehood about being a drug seeker, on my summary, I would most likely get denied for disability'. She just kind of hemmed and hawed uncomfortably, and mumbled “Sorry” before she rushed out of the room.

I called my primary care doc (again) to see if they could help me, or give me a referral for an EMG at my Neurologist's office but her nurse called me and told me that my doc wanted me to do physical therapy first, before she would write up a referral. What the?...how the flippity flying eff does that make any sense at all?!? There are times that I cannot believe I am forced to see these morons in order to get the meds I need so I am not bedbound and unable to care for my children. I am not a doctor and even I know that makes no sense. So...I can't sleep, or use my arms, and waiting a month to get into a physical therapist for what, I don't know, before I get a referral to see if my nerves are completely damaged is going to fucking help my current situation...at all??!!?? I cannot believe this woman is a doctor. The worst part of it all is that she is the best doctor that I have had to date...and that is a sad commentary on our medical system. I told her nurse exactly what I thought of that plan and she said she would call me back after letting the doc know that I something a bit more, um, immediate. So my dad comes and picks me up to bring me to the ER. So I spend another 3 hours surrounded by people coughing and hacking and I feel like death. I have paid $100 for my kids to be in daycare because if my husband has to continue to take any more time off he will lose his job and then we will really be screwed. Finally the nurse calls back and tells me that they have okayed a referral to my Neurologist for an EMG and my appointment is for the next morning!!! At least I don't have to wait any longer at the ER. My dad comes back to pick me up and bring me back home.

So the next morning we pay another $100 for daycare, because I am expecting to have an EMG and still can’t use my arms for anything useful, and set off for the Neurologist’s office.  I finally get in to see him and he takes notes of everything I say and then leads me out to the discharge desk and tells me it was good to see me and that the lady will take care of the rest and to just give her my name.  I am left just standing there in a stupor because I am so confused about what just took place.  So I wait 15 minutes for her to get off the phone and then I tell her my name.  She tells me that it will take about a month to get in for an EMG and another 3 months to have some cognitive/memory testing done.  So I make my appointments and leave.  $200 dollars on daycare and 2 days wasted on seeing absolutely no one to get no help for my current situation….all I want to do is go home and drown myself in the sink because that seems to be the most logical and reasonable thing to do after what I have just had to endure with our completely useless health care system. 

I would love to tell you about my Therapy appointment...but I don't remember it.

Lyme brain is a scary thing.  It is like living the movie Momento.  Who even knows how many times I have made this reference in my blog because I have no short term memory.  So my husband and I went to see the therapist, who I had some reservations about, and she actually wasn’t that bad.  At least that is what I told my husband because I remember nothing about going to see her, or what we talked about.  I called my husband to ask him when we were going to see her and he said, “We already say her on the 3rd, don’t you remember?”  No, I didn’t.  I don’t.  I don’t even know how to describe how absolutely terrifying that is to not remember things…and not just details, I mean ENTIRE events.  I have noticed throughout treatment that my blackouts wax and wane.  More than scary it is really frustrating.  I don’t remember phone calls or get-togethers with friends or family, I don’t remember entire conversations that were important.  When you tell people you don’t have any short term memory, after a lifetime of knowing them, they completely don’t understand what you mean.  To give a reference, it would be this: In my youth I used to be able to knock back quite a few alcoholic beverages – I guess you could say I was a bit of a binge drinker – and have black-outs, not remembering a lot of the evening, what I said or did, or how I embarrassed myself, etc.  Having Lyme brain is a lot like that only I get to escape the embarrassment of how I might have made an ass out of myself.  Anyway, this is a short post because I only got 3 hours of sleep last night and husband is not having an easy time trying to get the kids down for the night.

Anyone up for a cup of morning couples counseling?

My husband and I have our first date since...well, I don't even knew when.  Maybe his birthday last September?  Unfortunately it isn't the good kind of birthday date, unless you are the type of person who LOVES seeing your shrink, counselor, head guy, whatever.  I don't mind it actually, but I am not a morning person, and this is our first session with our couples counselor so I don't want to give her a bad impression of me, right off the bat, as the one who has issues to fix more so than her spouse.  I want my husband to be the one that looks like he needs a huge mental makeover.  I actually love almost everything about my husband....except for our communication differences, oh, and his inability to actually plan things in advance.  Other than that, if he changed any of the other things, that I find mildly to super annoying, there would be nothing left to give him shit about when I am feeling wily.

At least my parents were nice enough to keep our kiddos overnight so we could do this at the crack of dawn.  Our therapist may have had a morning divorce already on her hands if we hadn't shucked the kids off to Grandmatown.  A) My 4yr old is not a morning person either and isn't shy about letting you know that, B) my kids take FOOOOOOOREVER to do anything that doesn't involve honey on it (or in it), C) They can smell it when we are a crack away from falling completely apart and that is when they like to push us over the edge, like by peeing on the floor or something else time consuming.  My poor neighbors probably are going to be really happy to know that we are finally going to see someone.  I was sure they were going to give us a gift certificate for a  buy 1 get 1 free Couples Therapy coupon card for Christmas this year.

Anyway, my husband and I are staying out of each other's way until we have to get in the car so that our therapist doesn't get the wrong, albeit, correct opinion about how are marriage runs....our marriage is not a morning person either.  I already hate to give up the only hour that is not 3am-6am (when I can't sleep) that is all mine, with no kids, researching crap on the Internet and having my cup of delicious coffee - no matter that it is a reheat from yesterday. 

My husband actually did the task of finding us a counselor.  My husband is a very capable man in so many, many ways but this is not one of them.  He has a lot lower standards than I do when it comes to someones competence of being a therapist/psychoanalyst, etc.  He interviewed the person we will be seeing today and then she insisted on having a pre-session chat with me.  This rang little alarm bells in my head but I did it anyway.  She sounded like she was practicing her therapy techniques on me while we were talking, and that annoyed the hell out of me.   Both my husband and I were psychology majors, ironically, and there is nothing worse than knowing what kinds of therapy tools they are using on you.  I like my therapists to be confident in their practitioner ability to listen and reflect what they heard in a way that you can't tell they are doing it.  I also like them to really listen to what we are saying and offer a unbiased viewpoint on what they think we could do instead of what we are doing.  I also don't like a lot of constant 'affirmation'.  Crap...I am getting myself all crabby and worked up before we go.  Well...wish us luck as we may need be needing a different therapist immediately.

To Cut Myself Off From Toxic Family - Trimming the Family Fat

So, as I posted earlier - or maybe I didn’t because I have no short term memory and am too lazy to go back and read what I have already posted – I cut myself off from my mom’s side of the family this winter.  I went to Thanksgiving, because it was at my mom’s and only one aunt came, but won’t be joining my extended family for family celebrations anymore, period!

A lot of us who are traveling the muddy streets of our Lyme trek come across friends and family that range from silence (ignoring that there is anything wrong) and disbelief (of Lyme) to being downright nasty and rude about it.  It seems like the majority of family are in this negative spectrum which surprises me.  I guess I could see a few nay sayers, in my family, but the majority??!!??.  The thing that boggles my mind the most is that my family has purposely turned their back on me (on us) when they know we need love and support the most.  They are, for some cosmic reason actually viscerally ANGRY at me for saying that I have Lyme and that I gave it to my 2 little girls.  It makes no sense at all.  Initially my parents were in this camp, that they didn’t believe me, and they just didn’t want it to be true…especially when it came to their grandbabies. 
I think I also need to explain a little of my background so it makes sense why my family has done this.  I have always been the proverbial black sheep of my family.  I was born out of wedlock, had an alcohol/addict father who didn’t pay any child support so my mom was on welfare until I was about 6yrs old.  She met my step dad when I was 4 and we moved it with him shortly after and he cared for me like I was his own.  I had Lyme since I was a little kid, there is a possibility I was born with it too.  I had a lot of health issues my whole life.  In my teen years I had extreme anxiety and depression rear its ugly head.  I felt out of control, my relationship with my parents was terrible and out of control too.  I started using alcohol and drugs at 13/14 and it was a major part of my life until my early twenties.  I hated myself, my life and was as self-destructive as I knew how to be.  At some point I got sick of trying to kill myself through drugs and alcohol so, in my mid- twenties, I cleaned up my act and tried to resume a normal, productive life.  I met my 1^st husband in my late twenties and got married.  He was not a bad guy but we were very ill suited for each other and ended up getting divorced a couple years later.  I met my current husband when I was 33, got married at 35 and had two beautiful girls.  So, because I have a checkered past, a lot of my family still sees me as the person they always expected me to be; a failure, a drug addict, a liar, and basically a horrible and bad human being all around.  However on my path of self-destruction I never did anything to directly hurt my extended family (outside of the mental anguish I caused my parents) so it confuses me why they still judge me as the person I was 20 years ago.  Oddly, the problems with my family didn’t start when we found out we had Lyme & Co in July, they started when we found out my 4 yr old had extensive food allergies that could kill her I had to ask some concessions for her safety at family gatherings.  For example, I asked that there not be bowls of loose nuts out, and I asked if we could make simple mashed potatoes so that she could eat what everyone else was eating and feel part of the family.  There is nothing more painful than watching your toddler get repeatedly left out of things because she cannot eat any of the food at parties or family gatherings.  Anyway, because of this I pissed off a lot of people.  To quote my Aunt, I “have no right to demand that anyone go out of their way to make food that J can eat.”  I know that my family thinks very little of me. 
My mom recently had breakfast with two of my aunts after the Christmas gathering, that I refused to go to, and they told her that I couldn’t be trusted because I was a liar, and a drug addict.  A liar because I proclaim to have Lyme and that my kids have Lyme.  A drug addict because I am reliant on pain medication to function and take care of my kids.  They also said I am rude and demanding.  Rude and demanding because I asked my cousin, who was hosting Thanksgiving, about the ingredients in the turkey brine and mashed potatoes in hopes that my daughter, J, could partake in eating with the rest of us. – My cousin told her mother, my Aunt, that I had demanded she make special dishes for my daughter which I didn’t, and because I am a liar/drug addict/abuser mother the rest of the family believes her side of the story.  My Aunts also insinuated, if now outright said, that I am a negligent and abusive mother.  Abusive because I am hurting my kids by giving them long term antibiotics to treat an illness I am making up, and negligent because I would wantonly risk my daughter having an anaphylactic reaction because I would stupidly trust someone else to make food for her.   One of my Aunts’ even said, “I don’t give a shit about Kara, I only care about those little girls of hers”.  Funny because, if she cared about my kids, she would care about helping to make them safe during family gatherings by not having nuts out, etc.  If she cared about my kids she would care that my daughter’s feelings are constantly being hurt because she feels left out of what everyone else is able to participate in and that is FOOD.   
My mother was so upset about her own sister’s bashing her daughter and showing absolutely no compassion for her daughter and granddaughters that she actually broke out in hives that look like shingles.  They have always treated my mom like crap, which I also don’t understand, and have made her feel unworthy and like a joke her whole life.  My mom does not know how to stand up to her emotional bully sisters and therefore does not do a lot to stand up for me.  I feel bad that she is being caught in the middle but I think their conduct at breakfast was a real wake up call for her. 
Here is the email I sent to my Aunt before Christmas.  It is badly written because I was so upset.  I wish I was better at letting all this crap slide off my back but it tends to consume me sometimes, a lot of the time.  Anyway here is the email and I wish I would have edited it before sending so it sounded more congruent.

****y,

If you were that hurt about me not coming you would have called and discussed it with me. You and (my cousin) have told my mom and me on at least 2 occasions that you didn't like us and didn't want to be around us. My mom remembers this pretty clearly too. Talk about hurt. But we moved on and tried to keep that behind us and moved forward as a family. We have been there time and again when you and (my cousin) needed support.

The fact that you are more concerned with being 'hurt' that I am not coming, without even hearing me out about why I have made this decision, just proves that you would rather be right than actually have a working, loving family relationship with me or my kids. You have all these judgments and disapproval about what I am doing, yet you have not once called me to talk to me about it, nor have you even showed any interest in what my family is going through. I don't want to spend time, or expose my kids, to a family that would rather bash me behind my back than care enough to speak directly to me about their concerns. And by speaking your concerns I do not mean what (my cousin) said during our phone call, that I probably have something other than Lyme. I am tired of fighting against all this negativity and disbelief. It is too hard, too painful and it is tearing me apart.

People DO have every right to talk about me behind my back, have their own opinions, etc. However, I have every right to respond to those often thoughtless remarks, made by people who have done NO research on Lyme, nor have bothered to even talk to me about it, when I hear from the grapevine what is being said. It is hard on my mom too, to feel caught in the middle, and if you knew how hurtful and upsetting this has been to her you all would stop it. But, many people in this family are far more concerned with being 'right' than concerned about how this affects my mom’s heart. She is so afraid of being cut off the family if she stands up for me that it is tearing her apart and causing conflict in our relationship too. I don't think you all care one iota about the damage you cause when you back stab me to my mom rather than talk to me. It is apparent that you all care more about hammering your poisonous judgments into my mom's ear rather than having a two way, open minded conversation with her. If you truly cared at all about her, or my family, you would find a way to give loving support and withhold your stinging judgments. If you care more about proving your point then all you are achieving is losing us as family. My mom does not make decisions about how we have chosen to treat our Lyme disease and all this negativity she hears only makes her feel more helpless and more torn apart.

You have no idea what is happening to my family, to me, to my kids - you made that glaringly apparent the last several times we have been together. Whenever I try to talk to our family about what is going on they also just act disinterested and uncomfortable. Unfortunately our lives are consumed with this horrible illness and it is what it is right now. We need people's support more than ever and all we have is family that has pulled away. The only family that has reached out to us is the W*******, the rest of you just want to believe I am crazy and want no part of it. It is funny that the only loving support I have gotten so far is from them. If you want to stay stuck in your own self righteousness then I want no part of it, no part of a one-sided relationship with you and others in our family that have chosen to ignore what our family is going through.

Keep feeling hurt if you want to but I can guarantee you it does not come close to the hurt I have from how little this family has reached out or supported my family during this really scary and really hard time. My duty as a mother is to protect my family from people who do not have their best interests at heart, and that is what I am doing by cutting myself off from that kind of family until it changes.

Boring symptom gripe and my current med list/issues

I was back on my abx but had to stop again because of my arms and legs going numb and I am having some neuro weirdness.  I am on so many medications besides my abx that I can’t tell anymore what is a true herx, or just plain side effects to med combinations.  I probably would not stop my abx if I was still able to sleep but the numbness in my arms is horrifically painful and that, with the insomnia from herxing, keeps me from sleeping more than a few hours during the night and then I am in really rough shape then next day.  Mornings after I don’t sleep I wake up in all over pain, some from the nightly withdrawal from my pain meds, and the rest from lovely Lymie joint and muscle pain.  My husband usually gets our kids set up with breakfast before he leaves for work while I sit and wait for the pain meds to kick in so I can move my body and function like a relatively normal person.  I know I have said this a thousand times but I will say it again, losing my independence is probably one of the hardest things about this illness.  Having to rely on someone else to do simple tasks, do everything for you sometimes, is a real bitch. 

I am supposed to be starting Mepron next week to treat the Babesia but I need to be stable on the abx I take now and that isn’t happening.  I have already had to stop for a couple weeks because my liver enzymes were elevated, and then for another 2 weeks because of the numbness in my body.  If you have never experienced your limbs going numb it is a horrible feeling.  Not only are they numb, but the pain from not having any circulation is unreal. 

My current abx protocol is Ceftin, Clarithromycin – to lower general Lyme load, the Ceftin also targets Bartonella so I will frequently get the weird cat scratches on my chest and back, or get little chigger bite looking things on my stomach and neck.  I take Nystatin & Diflucan for yeast.  For supplements I take 500mg of Magnesium, 250mg of Zinc, 3 tbsp of fish oil, 50-200 billion probiotics, & vitamin C.  I take Hydroxyzine (or 1mg of Melatonin) – 25mg 1-4 tabs at bedtime for sleep, Cycolobenzepr (Flexeril) 10mg 1-2x day for back spasms, Lorazepam- .5mg 3x day for anxiety or to help me sleep, Methadone -5mg 3xday for pain, Metoclopramide for nausea from my abx or from the migraines, fleet enemas for constipation (I got my coffee enema kit in the mail but I am still working up the nerve to use it).  Trying to remember to take any or all of this has been a real struggle.  I even forget to eat some days: I have a terrible taste in my mouth all the time and no appetite.  If I get hungry it is usually late at night or in the middle of the night and I crave sugar (mainly chocolate) and carbs. 

The guide to driving your friends and family away.

I have been told that my facebook posts about the realities of living and breathing Chronic and Congenital Lyme Disease are a bit "off-putting" to some (all) because I sound so angry in my posts.  I have been told that people get "tired" of always hearing me gripe about how hard and miserable things are.  I have been told that maybe I "don't need to share so much detail" about what Lyme is doing to my family because it is "upsetting" to people and they "don't know how to respond or how to help me". 

Yes, the ugly truths about people's hardships are hard to hear, they are unpalatable, they do make you feel helpless....but that doesn't mean that they shouldn't be allowed, nay encouraged, to tell their stories, right?  Maybe if I sugar coated the horror of what happening in our lives then it would be acceptable table talk about out loud? 

I am conscious of not dominating conversations with the negativity and trials and tribulations of our current situation.  In fact I get sick of talking about it, thinking about it, breathing it night and day, being tormented in my sleep by it, living it, watching my children live it, watching my husband get more and more exhausted trying to hold us all together and function like a normal human being out in the real world too.  I do make a point when talking to other people to focus on them and theirs and what awesome or mundane things they are doing in their lives.  Yes, it is so nice when someone calls me to ask how we are doing....I can probably count on my one had the times this has happened.  I feel I would be doing a disservice to my children if I didn't use my voice to call for help for them, for me, for our family. 

It is a lonely existance, living with a chronic illness.  I try to put myself in other people's shoes and try to imagine how I would be dealing with someone in my situation, and I can say I honestly don't know.  I know it is selfish to expect people to be thinking about us all the time, but what I don't get is how a lot of our own family will not even ask us how we are doing when they see us.  It is as if this nightmare is not even happening.  It makes me crazy and angry and resentful.  Sometimes I feel so abandoned by the world and wonder why I even keep trying.  I used to be a fun person, or at least not as irritating as I feel like I am now.  I hate the person I am now...I am a shell, a rotting husk stinking of desperation and fear.   

What Congenital Lyme Looks Like Part2 - My 2yr old

So by the time I got pregnant with my 2nd (they are 23 months apart) I was convinced I was completely insane and I was not coming back.  I still did not know I had Lyme at this point.  I was so very sick, and every doctor I went to gave me a new diagnosis and/or kept telling me it was all in my head and referring me back to a psych doc.  There were a lot of people, including me, who were appalled that I would get pregnant again in the state I was in - one aunt even told me to abort my 2nd child.  However, my daughter, 'A' honestly could have been an immaculate conception, that is how often my husband and I were even intimate...ONCE since the birth of my 1st child, and I got pregnant!  Even so, I was happy that we were going to have another child.  Being an only child I did not want that for my daughter but, after 'J's horror of a delivery, and the issues that ensued, I really didn't think I could bring myself to have another child so I am so blessed that it happened.  Ironically, as the pregnancy hormones surged, I started to feel better (even though I was pregnancy sick as a dog) and all of my psychiatric symptoms just melted away.  I even had some energy for the first time in 2 years.  She was due December 1st but I went into early labor on Halloween.  Luckily they were able to stop the labor and she ended up going a week past her due date.  I had back labor pains with both my kids, and again was in labor about 26 hours with failure to progress.  This time I knew better and wouldn't let them give me Pitosin and eventually I elected to have a C-section before either the baby or I got too stressed from the prolonged labor.  I was TERRIFIED to have another C-section, after having one with no anesthetic, but they got the epidural in right and everything went a lot better the second time around.  She was a fussy baby that didn't sleep much and when she was unhappy she would rage like no baby I had ever seen.  People would comment on how loud she could cry.  Other than the rages and reflux and bad sleep she was a happy baby in comparison to my 1st.  Since I was doing so well mentally, after her birth, I was not on any psychiatric meds and was able to breast feed her for 16 months until I found out I had Lyme and was infecting her with my breast milk.  She did not want to stop nursing and it was really hard on both of us; I am still crazy sad that I had to stop.

To date her symptoms have been and are:
Reflux/GERD (since we had no luck with any of the reflux meds with my 4yr old we didn't even bother getting her tested or give her any reflux meds.  She was worse when I had dairy so I stopped dairy while breastfeeding and it got much better), labial fusion (at about 6 months her labia fused together over her urethral opening and we had to use progesterone cream to open it back up.  I have a suspicion that it was from the irritation of baby wipes, that we were trialing from Costco, and it paired with the systemic inflammation from the Lyme), chronic yeast infections (she has had problems with yeast since she was a newborn, and we have to use clotramizole a lot on her vagina to keep it at bay), bouts of frequent and painful urination (she will grab at her vagina and say 'owie', and each time this happens we get her tested for UTIs but it always comes back negative), food allergies (to dairy, nuts & wheat; she could have more food allergies but we are on such a strict diet for J that A doesn't get exposed to a lot of foods so we don't know - luckily she did not have the eczema that my 1st had from her food allergies), chronic constipation (we give her daily prune juice and try to push fluids but it only helps minimally), rages, (I am not sure I could even describe the intensity she had when she was upset - even as a tiny baby - but it wasn't normal),  itchy ears/drainage, (luckily she has had only one bad ear infection but her ears bother her often and every time I bring her in they are fine), sound and light sensitivity (cannot tolerate loud sounds or bright light, she will shield her eyes in sunlight and say, 'hot, hot'), nightmares/night terrors (which caused her to wake a lot in the night crying, since starting abx they seem to have diminished), night sweats (general temperature irregularity - both my kids can sleep in a t-shirt with a fan on them all night with no blankets), stomach aches (some from the constipation and some from the abx), insomnia/frequent night waking (as a baby she never slept more than 2-4 hours until she was about 18 months and still comes into our bed every night, both of my girls do.  I know it is a big parent no-no but they need all the comfort they can get so we don't force them back into their own bed),  sensory processing disorder (can’t tolerate food if it has more than one texture, A doesn't seem to have the same level of hypersensitivity that my 4yr old, J, does,  I can actually rub her back and touch her skin without her feeling any physical discomfort; not being able to touch my 1st baby (J) was really hard for me so I was over the moon to be able to lavish physical affection on my 2nd because she could tolerate it),  recurrent bouts of high fevers (since a few months old she would get these prolonged fevers, about 102-103, out of the blue, that would last 5-7 days without any other symptom. One time she developed a Petichial rash during a bout of fever and, fearing meningitis, we brought her to the ER for a CBC but it came back as a viral infection, not bacterial.  The high bouts of fever have stopped since starting abx), plugged sinuses (she is always stuffy at night when sleeping, I use a lot of Vicks to keep her sinuses open, so she can sleep better, and we have a cold air humidifier in their room which also helps), mild Hypotonia (as a baby she was a lot stronger than J - she was as sturdy as a mountain goat - but around 18 months had some episodes of leg weakness and falling, just like J, but it seems to have gotten better since starting the abx),  bad separation anxiety (the odd thing about this is that, she not only freaks out when my husband or I leave the room, or leave her in the care of someone else, but freaks out big time if ANYONE leaves the room - even a pet - or leaves our house after visiting.  She gets very upset and lays down on the floor and sobs - it is really heart breaking), general anxiety (she has a lot of fears of different things, some common like the vacuum and toys that move by themselves, but if she gets afraid of something, and/or has a bad memory about something that happened, she will obsesses on it daily for weeks to months ,and will get visibly upset as if it just happened, low grade fevers (99.1-99.5 since starting the abx.  Every time I think she has a fever, or she is really flushed, her temp is always really low), OCD issues (examples: she would pull out a hair every time I changed her diaper, a need to wash her hands a lot, needing her blankets just so, and even, across her back and folded over her arms just so or she will freak out for as long as it takes to get it just right.  She gets fixated on things - like needing a specific toy or baby doll and will be agitated and will not stop until she gets what she wants/needs - it is more intense than normal toddler gimmes, migrating body pain and headaches (she has been complaining of arm and leg pain since she first learned to talk and could say 'owie', we thought that they may be growing pains but our pediatrician said that growing pains don't start until the age of 6.  Since finally getting her on an abx regiment, that she can tolerate, she doesn't complain of pain unless having a herxy flare up), extremely sensitive scalp (she will cry in pain whenever we have to comb/brush her hair).

There are some I am missing but will update when I remember them- I love having a Lyme brain!

1/2 of these symptoms she has had since birth and the other 1/2 she developed what seemed to be overnight.  Even with all these symptoms she seems to be a pretty happy kid, and if she had been my 1st child I would not have suspected anything was really 'wrong', and chalked it all up to normal, weird, childhood issues.  She is the only one of us that is CDC positive for Lyme, and I suspect that she has a higher Lyme load than 'J' because I breastfed her longer (only 4 months with J) and she was getting the bacteria from my breast milk.  'A' has Lyme, Bartonella & Babesia.  I am worried about PANS/PANDAS with her, and I guess with my other daughter as well, but there is a part of me that doesn't even want to know because it is all so overwhelming already. 

Currently her antibiotic and supplement regiment is:
Nystatin (for yeast) – 4ml 4x day, we had a really hard time getting her up to a full dose because it caused her to have multiple, massive whitish colored poops and her but was so raw after awhile.  It also seemed to cause her to have an upset stomach.  We had to stop and start several times and eventually go really, really slow in increasing the dose. Clarithromycin – ½ tsp 2xday, Amoxicillin-5ml 3x day.  She was on Ceftin – ½ tsp 2x day but could not tolerate it.  We tried to do it twice and after only a day or two I had to stop because she had such bad mental aggitation (upset and crying constantly) and inability to sleep from the bad bowel upset, Cod liver oil - 1 tbsp 1x day (Nordic Naturals Omega-3 brand), Multi-vitamin (Animal Parade Gold brand), Vitamin C (Co-op brand crystal powder C so it goes right into the blood stream and is more effective than the chewables. It is a bit tart so I mix it with honey and apple juice), Probiotics – 20billion 2x day (DDS Probioplus brand, we give it to her ½ hour before breakfast and at bedtime on an empty stomach and my kids don’t mind chewing the capsules up as they can’t swallow them yet).

Detox: Epsom salt baths.  I am going to start giving my kids more lemon juice, and figuring out a way to get them to ingest the milk thistle or dandilion tea.  After the 5th of January we are going to cut out all gluten and as much processed sugar as possible.