Bart Treatment Update for Tots and I

Me:
After 2 months of treating myself and my 2 & 4yr old for Bartonella things seem to have stabilized.  I am still not up to my full dose - also found out I have the Methylation gene mutations (haven't addressed this yet) - but the girls are. 

Initially I had horrendous bouts of depression and anxiety but those seem to have calmed down since I backed way off my meds and am ramping up super, duper slow.  My joint and bone pain, mostly from my hips to my feet, has really increased; I often walk like I have been on a horse all day and feel like I have restless leg syndrome when I lay down to sleep.  Sitting makes me really stiff and I find that I do much better if I keep moving around but at a slow(er) pace and intermittently rest; which is sometimes impossible when you have small kids.  My migraines are back but less intense - I think the abx combo on Clarithromycin and Ceftin was helping alleviate them...also the pain meds but I am no longer on those.  I had my best week in a long time, my best day ever since treatment started 10 months ago but then I crashed again.   The fatigue days on Rifampin (not sure if it is from the Bart flaring or side effect of the medication) are absolute hell.  I literally can't keep my eyes open and have to get someone to come and take my kids.  The better days my cognitive issues are less and I can drive, the bad days I am a lump of uselessness and misery.  Still really having a hard time eating and drinking.

The Rifampin has stirred up a lot of Bart skin issues.  I have more cat scratch/nicks on my throat and back, rashing, ring worm looking patches, scaly thick skin on my ankles, psoriasis like patches on arms and hands.  I have always had dry eczema'ey skin and it is really bad now.  I am also getting little salt crystal granules (best way I can describe them) coming out of my scalp.

Rifampin has also caused frequency in urination and bladder pressure for all of us.  Makes me feel like I am pregnant again!

After a straight road downhill - switching to treat the Bart has put me back where I was before treatment and it is much more bearable to be alive now.  I have noticed that we all feel better when the weather is not cold and damp. 

The girls and I are also now seeing a Lyme friendly Alternative Medicine doc, along with our LLMD and their Pediatrician, who is monitoring blood work, body/organ functions, and other issues.  Our LLMD is strictly antibiotics so she is helping us with supplement additions to keep our body systems stable.

Girls/2yr old:
A has had a decrease in body pains/headaches and is now having regular, much more normal, bowel movements than she has ever had since birth.  There is some degree of loose poos from gut irritation from the abx but it isn't diarrhea.  There is an increase in fatigue and anxiety/rage meltdowns every time we have upped her dose on the Rifampin - we are now at her full dose so I will update later when we see what happens after she stablizes.  To give an example of the extremes of her meltdowns, she recently gave herself a bloody nose because she was screaming so hard when we tried to clip her toenails.  Also her sensitivity to sound and light/sun has increased.  She often complains of tummy aches after she eats and says she is hungry in between her frequent meals.  I don't see a lot of bloating so I am thinking this is nausea/tummy issues from the abx, probiotics, grains, or just...I have no idea.  I was hoping to see more improvements with her anxiety but that could just be an age thing too.

Her inner labia has fused shut (for the 2nd time) from yeast issues, imo. I want to avoid surgery at all costs so I reluctantly agreed to use the Premerin cream again and also adding in Flax seed oil (food grade) which also has some hormonal properties but we are seeing a Pediatric Urologist this afternoon for more information.  She is still gaining weight, has a decent appetite and is happy and playful (most of the time). Her blood work looks pretty good (now) although, unfortunately, she will have to continue to get pokes (which is traumatic for all) to make sure she is not going into any organ or blood related distress. There is a part of me that thinks she would do much better on naturals but hopefully we will get there soon.  I still don't know my ass from my elbow in any of this and it is hard to keep track of what we are already doing. 

Since starting tx with Rifampin 'A' has had rosy cheeks with little red veins and gets small Bart pustule/pimples on her face and upper torso.  She has never had much in the way of any skin rashes or abnormalities (other than hypo and hyper pigmentation spots) but the Rifampin is stirring things up and wreaking havoc.

Girls/4yr old:
A has had a increase in joint/bone pain and stiffness in her feet and ankles.  She has very low energy in the morning and gets really hyper at night - even though she is exhausted I have had to cut out naps because it makes the insomnia worse at night.  Both girls are only waking once a night, some nights they sleep completely through and this has NEVER happened since they were born.  She is having regular, much more normal, bowel movements than she has ever had since birth. There is some degree of loose poos from gut irritation from the abx but it isn't diarrhea or from food allergens. There is an increase in fatigue and rage meltdowns every time we up her dose on Rifampin - we are now at her full dose so I will update later when we see what happens after she stabilizes.  There is less bloating and tummy ache complaints after eating.  She seems to have a more stable mood and can tolerate a lot more sensory input than she used to.  Seems like my girls are having complete opposite reactions to the Bart treatment!  Yeast is still a huge issues.  Bad days she is lethargic and unhappy and is very needy of soothing with herself with her Nuk & Blankie, or self-stimulation.  I am still seeing a decrease in allergic sensitivities all around.  She is still gaining weight and thriving so I am happy about that.  Of the two, she seems to be doing better on antibiotic treatment than my 2yr old. 

Diet changes:
We are really working to cut out all gluten, processed sugar, and GMO foods - this is a huge undertaking as we are already maxed out on food options with the gads of food allergies that my girls have.  I am trying my best not to agonize over the days I am unable to do this to the best of my ability...but that's how it goes when you are sick trying to care for sick kids.

Skin products: 
For vaginal yeast sits baths (these help tremendously) I use a cup of BRAGGS organic, raw, Apple Cider Vinegar With the "Mother" in a few inches of warm water and soak for 15-20 minutes.  Love this brand because it doesn't sting or irritate my uber sensitive skinned 4yr old and we also use it as a vinaigrette on our salads.  Depending on how bad the yeast is (the baths usually clear things up for a day or 2) I will either have them put Nystatin cream on their vaginas' or Barlean's Flax Oil (food grade).
I use coconut and olive oil for moisturizers and California baby soap when we bathe them.  We only soap them a couple times a week because the Bart has made their skin so sensitive.  Make sure the coconut oil is food grade if you are going to be putting it on your skin.  I also switched to Jason brand natural toothpaste for the girls.

Supplements:
Probiotic - I like this one the best - Ultimate Flora 50 Billion/10 Strains (I give them 50-100 billion a day).  I have heard that it is good to rotate primary probiotic with another so I am going to trial Jarro-Dophilus Allergen free (10 billion, so I will give them 5 of these) and also add in a Saccharomyces boulardii (NutriCology) and see if this helps. 
Candex - to treat the yeast
Cod liver oil - 1 tablespoon a day of Nordic Naturals
Vitamin C - 1 gram of crystal powder we get our local Co-op brand.  I have heard it is better to do small amounts of Vit C during throughout the day rather than one big dose but I am still trying to manage all that we already do on top of spacing everything out...it is impossible!
Milk thistle seeds - grind them up and put them in juice smoothies (we have not been very consistent with this but I am really worried about keeping their liver enzymes from getting elevated so we will work on it)
Multi Vitamin
D3
CoQ10

*I am not able to do this supplement regimen every day, but as much as I can I do. 

















 

Bartonella treatment update for the tots and I. ooops forgot to finish this post

Just realized I had posted an unfinished entry so forgive me for the time waste.  My brain is not working currently and I have the attention span of a gnat.  Here is the finished update. =)

So we are going on month 2 of Bartonella tx with the Rifampin.  I am officially off any pain management outside of ice, heat, epsom baths, muscle relaxer and Clonazepam.  I have imitrex for my migrains and Metoclopramide for nausea.  I am still on 150mg of Rifampin ramping up to every 2-3 nights in a row instead of every other day and hoping to it isn't going to catch up with me.  I have vowed this time I will not let the meds throw me into complete disabling herxes that leave me unable to take care of my kids for days on end.  So far I have been in a state of walking dead fatigue,  complete hopeless dispair, anxiety, thoughts of ending my life, joint & bone & muscle pain, neck and shoulder pain.  However...I think this Rifampin might actually be helping a hair.  Some things that have changed since starting tx 10 months ago is that I can sleep a little better and my migraines have decreased.  I still have my 27/7 headache and neck pain but the kick in the ass migraines have decreased from daily to 2-3 a week.  I was taking the Imitrex every day but now can actually miss some days if I take care not to push myself.

I have not resumed my coffee enemas due to feeling too crappy to care for myself.

Another badly written post about Lyme and how my life sucks majorly, aka Bartonella Treatment.

I am in Rifampin hell.  By hell I really mean the burning fires of doom.  I should say that I am not a religious person, mostly because I was raised by ex-Catholics who had a sour taste in their mouths about the Church and all associated with it.  My parents believe in faith though...and that is another thing I did not really learn growing up.  So this is what I imagine hell to be like just from the generality of what I have heard on the subject of heaven and hell, non-religiously like.

Watching your kids struggle, be sick, need you - when you cannot possibly give them what they need, getting stressed out because mama looks like death warmed over and is acting erratically, and much much much more, is torturous in ways I didn't think possible.  At this stage in the game I don't really know how to get them well.  I know what would help but I can barely put two sentences together and don't even bath bi-weekly anymore, if that gives any indication of my ability to help anyone right now. 

People always telling me about the airplane mask story...moral, you help yourself 1st so you can help your kids.  But if you can't help yourself first...then what happens??  Because that is what is happening in my family.  If I try to get well to be a mom for my kids then I get too sick to be their mom and there is no end date on that yet so...now what?...my fucking mask doesn't work so do I use my kid's?

The worst part is having to put a price on our lives.  This rolls in my mind and makes me crazy: We don't have the money to do what it takes to get us well.  We could afford it, for awhile anyway, if we opted for the road where my husband ends up losing his job and then we lose everything but the clothes on our backs.  BUT: We could afford to do that.  Could we?  What if we put it all up for betting and even just one of us went into remission?? 

Lymies are like the suckers at a Fair's ring toss booth.  Tossing ourselves at anything that looks hopeful, even though we know it will take everything in our wallet without a guarantee.

My kids are in Rifampin hell too. Symptom increases in; rages, muscle weakness, fatigue, jaw pain, joint pain, muscle pain, anxiety, tics, autistimy flaring in my 4yr old. Side effects of the Rifampin seem to be stomach upset, diarrhea (this is so rare I almost count it as a miracle my kids are normally so plugged up), and drowsiness. I have them on 1/4 of the dose they have been Rxed. Going to move slower than slow. 

My symptom increases have been; anxiety, ear ringing, muscle weakness, paranoia, joint and weird organ pain, headaches & migraines, neck pain, pain pain, FATIGUE, and something something...oh, right!, cognitive function right down the shitter, or "potty" as we call it in our house.  Side effects of Rifampin are; drowsiness, diarrhea, and no-appetite (not that it's really working in my favor and I probably could stand to lose another 10plus). 

And I forgot to mention we are all peeing on the "potty" like crazy.  When you already have 2 tiny kids with 2 tiny bladders and then they have to pee 2-3x as often, plus my tiny, currently weak (I am not much of a Kegeler) bladder is a LOT of time we have spent in the bathroom this week.  Plus all the "accidental" peeing around the house as an additional bonus.

We got out the juicer and are going to start doing more green, detox juicing - just need to get to the grocery store regularly and the time to juice (all of this is on my husband's shoulders along with everything else).  I am going to try Mitosynergy when I can drink enough water and I am too sick right now.  Need to up the probiotics.  Going to get parsley and burber drops....lots of other plans too but no energy or bodies to execute them. 

My 2yr old Congenital Lymie update

We have a new Lyme doctor, same state as our other one.  There isn't many people in MN, or that treat peds. 

My comfort level with treating my kids by long term abx is a pretty big zero.  I have had so much judgement from friends and family members over this that it has literally ripped about 1/2 of my relationships to smitherines.  Had my kids and I been diagnosed with Cancer instead, and I was going to choose an alternate therapy you can believe I would still have all the unwavering support that should be granted to us now.  I hate the Cancer comparison to be honest but having Lyme feels like a death sentance a lot of the time.  A race against the biological breakdown of your cells and organs. 

Anyway, before treatment, A, was a pretty healthy baby.  She was not a good sleeper, had reflux like my 4yr old, was dairy intollerance/allergy and would spike really high fevers 102-103 for 5-7 days at a time, no other symptoms.  We brought her to the ER twice for the fevers; the second time she had developed a petichial rash that was spreading before our eyes.  All of her blood work, of course, was fine.  She complained of migrating pains and headaches.  Light bothered her in her eyes and she had a lot of anxiety/fears about things, nightmares, constipation.  She was a week past due, great Apgar score, nursed fine, met all her infant milestones (could climb before she could walk), and walked at a year.  She started potty training at 18mos and other than pooping in the pot, she does all her bathroom stuff herself with minimal help.  She is finally starting to talk more.  It is hard to compare because my 4yr old, J, was speaking in multiple sentences by 18months. 

Once she hit a year was when I noticed her complaining of pains and headaches.  We all got diagnosed with Lyme, Bart & Babs in Aug of 2012 but we could not get her stabilized on her abx until this December.  Since she couldn't tolerate the Ceftin our LLNP switched her to Amocicillin - which our new LLMD feels is a pretty useless abx. 

Our new LLMD things that bart is huge in the Midwest and needs to be dealt with 1st or people will never get over that initial roadblock.  He is more old school in his Lyme protocol.  A lot of people like him and trust him with treating their kids....at this point we have no alternative and so I am really hoping he will help us more than our other one did. 

A is now on Rifamprin & Clarithromycin - plus some supplements.  I want to start more green juicing.  The more research I do on Lyme the more I think that repairing the mitochondria is what is going to eventually get us on top of the Lyme.  I think the abx will help beat it back but they are also starving the mitochondria too and so you have to work double hard on getting the body systems repaired.  But...here is a little snag.  I can barely stand up most days and it feels like someone is asking me to step out in the cold and run 5 miles, that is about how monumental all this feels. 

A's symptoms seem better since starting tx.  She is definitely more fatigued and crabby, lately, and the dark circles under her eyes make her look like absolute death.  A couple of times I took them off abx for a couple days to let their systems just have a break. 

Everyone out there seems to be taking charge of their Lyme and their kid's Lyme and just forging ahead and kicking ass.  I just can't seem to pull myself there when I am feeling so sick.  I am trying to push myself to keep moving.  I know I am taxing my system but if I don't stay strong I am going to just stop being able to keep going on.   Would love to hear how others do it...really would.

I am tired of my life, the way it is.

I know I have to finish up a post, I know I have to take a much needed shower too...but this life of mine just keeps getting derailed for weeks at a time in a blur of nothingness sprinkled with shit.  I am baffled at the level of overall encompetancy in this shitty little world of rats scratching in the dirt. 

The second I woke up this morning I had a placenta of misery and dread surrounding my body which then just kind of melted into a bad oozy mood.  Since my great excommunication and royal screwing over by my Lyme practicioner I have been in suspended animation of fear and pretty much utter I-don't-really-care-to-see-another-day blankness.  Oh I thank god for my kids the most.  This is the first real bout of depression that my 2 yr old has seen me in.  What makes me irate is this depression isn't coming from some kind of chemical imbalance...it is coming from life being so fucking cruel, and not even in a purposeful, spiteful way - something I could at least wrap my head around - I hate depression. 

Does Lyme cause depression, or is just feeling like you are the walking, joyless, painful dead that kicks that baby into high gear?? 

My husband has called an attorney about what *llina H&C did to me, their illegal dumping of a patient.  Honestly, if we were the kind of family that good luck smiled on I would say we actually have a case of Med Mal. 

"Regardless of the situation, to avoid a claim of "patient abandonment," a physician must follow appropriate steps to terminate the patient-physician relationship. Abandonment is defined as the termination of a professional relationship between physician and patient at an unreasonable time and without giving the patient the chance to find an equally qualified replacement. To prove abandonment, the patient must show more than a simple termination of a patient-physician relationship. The plaintiff must prove that the physician ended the relationship at a critical stage of the patient's treatment without good reason or sufficient notice to allow the patient to find another physician, and the patient was injured as a result. Usually, expert evidence is required to establish whether termination in fact happened at a critical stage of treatment." From the AMA

I have had to put up a lot with abuse from the medical commity.  I have been bullied, made to cry, insulted, screamed at, mocked, forced to take medications and undergo proceedures, repeatedly, that didn't work, that made things worse, and once instance in the ER, having heart irregularity, I couldn't even get a doc to come in and check out my heart - my husband and I ended up having to walk out after over 3 hours of waiting.  I evenutally started havingmade to bring my husband to every single appointment so the doctors would treat me better, and with some legitamacy - basic respect.

How do you other people in this world handle the destruction of your life and still learn to live it?

Okay...part II is coming up next. 

My life as I know it has crashed and gone up in flames

Part I
I am not sure if I will be able to actually get through this entire blog post.  My 2 year old will be waking up from her nap and my 4 yr old is painting her latest watercolor masterpiece (called The Bird's Nest) and we are listening to Janet Jackson on Last.fm. 

I was recently dumped by an entire health system.  Yes, that is what I said, the entire health system, aka A***** Hospitals and Clinics in Minnesota.  Most of the specialists I rely on for all of my care are all within this health network.  The psychiatrist I have seen for four years, the primary care provider..for a little over a year (actually, the only one who has agreed to help me), my pain clinic, neurologist, orthopedic, etc, etc. 

Anyway - my primary has been managing my pain, reluctantly and badly, with narcotics, which so far have been the only medication that keeps me standing and taking care of my kids.  The pain meds have not worked well and they have so far refused to adjust my dose, or give me a stronger med (which would take care of the pain), because of all the controversy surrounding managing pain with long term narcotics.  I do understand the downside of narcotics for pain management, but I also know that when you I am in prolonged pain combined with severe fatigue I start to lose my mind and get suicidal.  I am not a suicidal person for the most part but when every waking minute is agony it is hard to want to live. 

Since starting my treatment I have been herxing more than not, and the pain has been unreal.  I have often had to take extra doses and this has caused me to run out several days early.  I have always been honest with my PCP about my struggle to make my meds last the entire month with herxing, and she has always been understanding and still signed off on me filling my meds a few days early.  My contract says to use only one pharmacy or let them know if I am using an alternative, which I have always done and also with the blessing of my primary, as she told me a month ago that she doesn't believe I am abusing my medication or being shifty. 

So....this brings us to yesterday.  I had planned on having a conversation about pain management with my PCP for my afternoon appointment.  That morning, however, I also was to have my monthly meeting with my psychiatrist in order to get my Lorazepam rx for my anxiety and panic attacks.  I have learned to have my husband accompany me to my appointments because I, for some reason, get treated more respectfully and he adds credibility to the myriad of insanity diagnosis that I now possess.  We arrive, let the front desk know, he makes a phone call, a security guard shows up and goes and stands outside my psychiatrist's door.  Don't know why but we thought nothing of it.  She ushers us in and before we can sit down she says, "I am sorry this had to come up but we have something serious to discuss", and hands us each an envelope.  Before we can open it she says, "Here is a letter terminating our client relationship and you are not welcome to use our services anymore because you broke your controlled substance contract."  I am still not quite registering what she is saying and my husband is staring at her like he has gone dumb.  I can see him start to boil and I open my letter which states. 

Dear Ms. W****

Dr. S.E., MD, and I have consulted with each other about your care.  We have reviewed your prescriptions for controlled substances with the MN Board of Pharmacy database, and we are concerned with the following:

1) You frequently run out of medication prematurely.  Prescriptions intended to last 30 days are being filled on average every 23-25 days.
2)You have used at least 10 different pharmacies.

These are serious violations of your A***** pain contract.  For these reasons, Dr. S.E. is no longer comfortable or willing to prescribe narcotics.  You are also no longer able to be cared for within A***** Clinics, including Mental Health and the U***** Pain Clinic.

In order to transition your care, I will be tapering your lorazepam and your prescriptions will be sent directly to L**** Pharmacy.  You will see Dr. S.E. today to start the taper of your narcotics.

It will be important that you find a new primary care provider and pain clinic in the Twin Cities as soon as possible.  In the meantime, you have R.K, NP to provide interim care.
sincerely,
GVD, MD

And with that she stands and tells we need to leave her office.  I am still sitting on the chair, but, but, butting like a motor boat because all of this has come completely out of left field like a bomb went off.  A psychiatrist, who I have worked with for 4 long and painful and sick years, WHO KNOWS ME, who believes me to be suicidal, who believes me not to be sick but deeply depressed and emotionally fragile, is DUMPING me with no warning, and for reasons that are not accurate.  Not only am I being dumped with no warning....I am being excommunicated from the largest health system in our state.  Not only that, but the person they are saying I can get interim care from is my LLNP who lives in another state and doesn't even bother to call me back when I am in a crises.  My husband finally found his voice and said, "But this isn't even true!".  She just continued to look at me like I was some disgusting criminal and said coldly, "I am not at liberty to share any information with you and I think you need to leave now."  Both my husband and I became frantic, peppering her with who, what, why, how questions and she continues to glare at me like I had murdered her dog.  She informed us if we had any questions then we could take it up with A***** Legal department, but she didn't have to tell us anything and wasn't interested in hearing what we had to say.  She told us again that we really needed to leave.  I can't even describe how deeply I was fucking devastated, torched, slapped, stabbed, freaked out like I have never been before.  My heart literally dropped into my stomach.  I couldn't even see straight or have the sense to stand up and walk out the door.  My husband grabbed my arm and helped me through the lobby and into the elevator  - followed by the same security guard - which, by this time, I am sobbing huge cry baby sobs that are loud and probably scaring everyone in hearing radius.  I can't even make my limbs move and everything is ice cold numb and I can't stop sobbing from the complete unfairness and coldness and rudeness and plain and simple assholedness of what this bitch of a woman just did.  Someone who's job it is to keep people mentally healthy just cut me off at the knees without a simple sayonara, sorry to see you go.  This woman who must have taken serious acting classes to have acted like she cared about saving my life for 4 long years only to turn on a dime and tell me to fuck off and die like she didn't even know who I was. 

My poor husband didn't know what to do.  He wanted to run and get the car for me but didn't want to leave me in the lobby crouched on the floor, bawling my eyes out and hyperventilating while people stared in horror, but he couldn't even get me to move I was so distraught. 

Up until this point I have had moments of great sorrow and wringing my hands over the unfairness of friends and family judging me and turning their backs on us.  I have had big, bawling cry baby sob sessions every time a lifelong relationship had come to a nasty end, out of the blue with no reason or warning.  I have had a lot of this since telling people of our Lyme diagnosis.  But all my prior experience with devastating abandonment and loss did not steal my bones for being dumped by my health system. 

This is probably a lot to chew on so I will post what happened at the afternoon with my PCP tomorrow.  To be frank, I am really trying not to think about this as much as possible because I came very near the end of my will to live yesterday and if I think about the enormity of what has just happened I don't know that I will be able to hold it together.  I already spent 12 solid hours crying my eyes out (while the kids were not home) and I allowed myself to cry on the way to the pharmacy to get my step down pain meds today.  My daughter held my teary face in her hands last night, and peered into my face with her eyes big and wide, and said, "Momma...sometimes the good days just turn bad, but it will be okay."  And they do, and they will.  My 4 yr old is a wise little soul.  She has seen more suffering in her young life than many adults do in their lifetime. 

I made the pinkie swear today to my children.  That I will not take my life, and that I will keep fighting until we are all recovered from Lyme, and that I will grab as much joy out of life with them as I can....and celebrate every blessed moment that is good.  Because the bad is a lot and it is really bad, so bad that if I didn't make this pinkie swear with my children now I may have not made it to this weekend. 

For any of you out there that are struggling the daily life and death struggle, that Lyme is so good at forcing you into, please click on this link and join me in making the pinkie swear. 

http://whatislyme.com/if-you-ever-feel-suicidal/

okay, now to put my squirrels to bed and finally rest my aching body until tomorrow. 

Fabulous remedy for Vaginal and anal yeast issues

My kiddos have horrible issues with yeast, especially since starting the abx and we are not yet GF. 

In a few inches of water add a cup of good quality Sea Salt (does not need to be the uber expensive stuff) and a cup of good quality Apple Cider Vinegar.

Soak bum and bits for 20 minutes. 

This has helped my kiddos tremendously and takes all the red, rawness away instantly. 

I don't know what the hell I am doing.

Before I start my tirade about yesterday I want to mention that I started herxing, around 11pm last night, from my Bartonella sequence on the Wellness Pro that I did on Sunday.  It definitely feels like a milder version of the Bart herx that I had for 3 weeks.  The only addition is some pain in my back...almost feels like bad gas or kidney pains.  I over did a coffee enema (did the entire litre by accident) and my bowels haven't been working very well since.  I have also been living off of coffee so that isn't doing me any favors.  I feel too worn out to properly care for myself and I am really struggling just meeting my kids needs right now.  I felt really good for a couple days and now herxing.  I am going to try the Yeast and Detox sequence on the Wellness Pro this afternoon.  I was hoping that my kids could use this machine too but it says that people with seizure issues shouldn't do it so my 4yr old can't as she has recently been diagnosed with Benign Rolandic Epilepsy.

 

Ok - here goes rant:

 

2 hour appt with pediatric allergist for both girls.  My 2yr old had lovely scratch testing on her back - was NOT happy. Additional blood work required by our insurance company before they cover a medication that 4yr old needs - 6 vials of blood, 5 of those for bullshit tests for the insurance company.  J (4yr old) was utterly traumatized. I wish I would have filmed her screaming in agony and sent that... to my insurance company and had it to show all these doctors exactly what they are doing to my child all because of their ego and politics. This will be the last time I comply. I will not subject my daughter to torture to please the insurance company. I almost vomited from watching the raw fear and hearing Junipers begging and screaming in terror. I can't do this anymore, there has to be another way than this because my heart can't take it. I am so sad and feel like I failed my child. My heart goes out to all those children (and their families) who have very serious health problems and need a lot of hospitalizations and require a lot of invasive procedures.  J asked me why she has to go the the hospital all the time, and then told me that this was the last time she would do it.  She asked me could I just lie and trick the nurse next times so she doesn't have to have this done to her anymore. I hate this so much, and I hate that my baby has to suffer

 

I hope my these insurance companies and money mongers rot in hell forever.  I really feel that this is going to far.  I don't think tormenting my kids, to this extreme degree, in order to take a particular abx is a good thing for their mental health. My 4 yr old already has huge anxiety issues and she has been in and out of the hospital, more often than not, her entire life. If she doesn't get a break, if this kind of thing keeps happening to her it IS going to permanently traumatize her and I don't want that to happen. My friend who came with could hear her screams from the waiting room and he said that he almost had to leave because it was so awful to listen to. I saw her face, I saw how terrorized she was and I can't put her through that again, I just cant.  People try to make me feel better about it by saying that it is always worse on the parents and frankly that is crap.  If you saw my child's face you would know that is the biggest line of bullshit ever.  The problem is that we can't get a lot of assistance from our Lyme practitioner between appointment times and this is when the emergent issues come up, so I am left having to make these decisions myself and I have no idea what I am doing....

I feel like I have to be so careful about questioning any thing my LLMD says because they are the end all be all of Lyme knowledge but they don't know everything either.  I feel it is my job, as my kids mother, and as a patient, to weigh the pros and cons, and research, what we are being asked to do for treatment.  Only, I am so worn out and I can't get answers anywhere, from anyone.  Everyone has a different therapy approach, a million - no - a billion different supplements that help this or that parasite and mold organisms and I DON'T HAVE A BRAIN TO FILTER OR PROCESS ANY FUCKING INFORMATION ANYMORE.  I really don't feel I am getting enough guidance from my practitioner and that scares the hell out of me.  I am at a point that I cannot do treatment and take care of my kids at the same time so what are my options now? No one will help me, help us find a balance.

 

After re-reading what I wrote I really think I need to do more work with being positive because all this negativity is also not helping me heal.

 

 

My Marathon Herx, My Periods, and the Wellness Pro 2010, oh my!

I am in a hurry because my husband and I have our 1st couple's therapy session today...hahahah, just kidding, we have our second.  The first one was entirely erased from my memory so I am excited, today, like it is my first time meeting our therapist and what she will think. 

Anyway, after a mother of a long herx, where the pain got so bad I went crawling to the ****** Pain Clinic for help as neither my PCP or my LLNP were available, or going to make themselves available.  Anyway, they actually helped me after an hour of sobbing uncontrollably and telling them that I have already done all of the THERAPIES, in this town, that I can afford.  So they gave me dilaudid and I can't even tell you the difference of pain relief between vicoden/percocet/methadone & dilaudid.  I was in so much NOT pain that I was able to get down on my hands and knees and play with my children for the first time in four years! 

Unfortunately those magic pills ran out after a few days, because of course the Pain clinic has no interest in actually managing my pain so I can function on a daily basis, and I went back to being completely immobile and miserable again.  However a weird thing happened.  A few days later I got my period and the herx basically abated, for the most part.  I was blown away.  Before Lyme my periods were as regular as clockwork with horrible hormonal fluctuations that always seem to take me by surprise, for some reason.  I have always had horrible PMS, Post MS, During MS, and then I would get about a week respite where my body and psyche felt normal and good.  I started my Lyme treatment at the same time I stopped nursing my 16 month old: I hadn't had a period for over two years at this time and lost all track of my hormonal cyclic destruction.  Another thing I have noticed with treatment is that I have been getting horrendous 3 day migraines right before I get my period.  All in all, the frequency of my migraines has gotten a lot less, as has the intensity of my 24/7 headache.  I know the pain meds help, but I also think the abx have helped too.

So, for the last three weeks I have been in a desperate and horrible state with this last herx.  I had tried doubling and tripling my pain meds and nothing.  I tried gallons of lemon water, upping my milk thistle, drowning myself in Epsom baths and daily coffee enemas...and NOTHING!  I ended up resorting to endless whining to the very nice people in my online Lyme support groups.  They were patient and encouraged me to keep hanging in there...but even that stopped being very reassuring.  I ended up getting pretty hopeless after week two and was starting to have some suicidal ideation.  It was scary and very distressing.  The tail end of week three, of this monster, marathon herx, pushed me into an embarrassing meltdown involving; some rum on an empty stomach, a Shakira album at top volume, my old coin skirt and bracelets, boas and faux fur wraps, green and baby blue eyeshadow over my eyebrows, belly dancing (badly) with my kids while sobbing uncontrollably, and the grand finale, my pièce de résistance, was me trying to escape my house in my socks in below zero weather and causing a possible 'domestic' scene on my icy front lawn.  Thank god my good friend, who was over helping me, kindly manhandled me back into the house and put me to bed in all my Shakira glory where I blessedly passed out and woke with absolutely no memory of my night of shame.  Sadly, very sadly, my kids did witness some of this and for that I am deeply, more, ashamed and feel like a terrible monster mother.  What people don't understand, who are not me (or my husband), is the enormity of the fear, the pain, the hopelessness, the frustration, the anger, the helplessness, the sheer pressure of caring for sick kids while being practically bed bound 1/2 the month, the incredible loss of my life, the loss of being a wife and a mother and a friend and a productive person....all off this rolled up into one giant burrito that have to chew on non-stop; morning, noon & night...and plenty of hours that I should be sleeping but can't because of the insomnia monster who forces me to sit awake all night and think about how much of this hell burrito is left.  While I don't really drink anymore, I badly needed to just have a release of all this negative weight that is slowly crushing me to death.  Luckily my kids always have reliable and nurturing people around them at every turn....even when mama has completely fallen off the wagon and is being crushed under the wheels.  I know I am beating myself up more than I should, but I don't want to scar them EVER....and as a parent that is a pretty impossible task even if you live in a normal and healthy household. 

So back to why I originally wanted to post.  Okay, the Wellness Pro 2010.  A kind, kind, angel in one of my support groups has loaned me this very expensive machine/unit thing that sends vibrations into your body to kill the lyme bugs and for other nagging issues you may have, like pain and yeast.  Because I am so desperate, albeit extremely skeptical of every and all treatments that claim to help pain and Lyme and related problems, I decided to just try it out and see what happened.  Since I am currently not on my abx, because I only seem to only be getting much, much, scary worse, I am at a good place to actually see if this machine will help me.  The Wellness Pro is not a rife machine, but more like a monster tens unit.  I am still not clear on the difference between the rife and a tens, and trying to find a lot of really good, informative info has not really panned out well.  That, and my attention span and ability to absorb info is not in great shape these days so it all just melts away into gibberish for the most part.

Saturday I did a sequence for Lyme and then the detox.  I drank a lot of lemon water as instructed and waited...but didn't feel much difference.  Maybe a little more energy but it was hard to say since I had just come off a three week, disabling herx...so everything felt a bit better by comparison.  Sunday I did a bart sequence and felt like crap afterward.  I followed it up with a lot of water and the detox sequence and then went to bed because I felt achy and headachey and anxious. 

However, this morning when I woke up - I had to be up 2 hours before my normal wake time for couples therapy - and I was actually able to get out of bed and walk around without feeling completely crippled from the stiffness and pain in my joints! Normally, the first thing I do in the morning is have my hubby give me a pain pill and I lay in bed until it starts to kick in.  Once it kicks in I am able to get up and move to the couch and have a morning cup of coffee and slowly get all my joints warmed up and moving so I can start taking care of my kids.   Anyway, I think this is fabulous if it isn't a fluke.  I will keep blogging about my experience with the Wellness Pro.  I am really hoping that this helps, and that if it helps, other people can rely on this as a way to help with their issues.  I am trying to finish this post fast because my kids are melting down and I have already spent more time on the computer than I intended....so, apologies that this post isn't edited for readability.    

My Doctors are in an Ego War - My Healthcare, The Casualty

Just got a call from my PCP - who is really angry with my LLNP because my LLNP wouldn't call her to discuss how to best help me when I am herxing and really, really sick.  *My PCP knows nothing about Lyme, doesn't believe I have Lyme, and will not educate herself about Lyme - I tried to bring her some literature to which she just tossed aside and told me she had already read it so I don't bother anymore because it could cost me big time.  I called my LLNP and repeatedly begged her to call my PCP (this was over a period of several months).  Finally my LLNP called my PCP but got her voicemail.  She then tried a coupld more times but everytime she called my PCP, my PCP was with clients or unavailable so she gave my PCP her cell phone number.  So, then I begged my PCP to just please call my LLNP.  So my PCP finally acquiessed and called my LLMD but was unable to talk to her because my LLMD was with clients or at lunch.  I reminded her that she had my LLNP's cell phone number but she said that she wasn't going to use her off hours to call.  So, now both of them are angry at the other and are refusing to call the other.  What makes it even better is that they are both irritated and angry at ME because of this.  Like it was my decision to choose asshole, egomaniac doctors for my care.  My PCP even yelled at my husband and I at one visit because she feels if we are paying for private care than we should be getting more than we are.  I tried to tell her that my LLNP was a one woman show and didn't have an entire clerical staff on hand to do all the busy, chart work and phone calling.  She got so enraged that she basically threatened that if we didn't like the care she gave us we could just rely on my LLNP for my care.  My LLNP lives 3 1/2 hours away, in another state....and I can't drive.  However, her little threat made my blood run cold because if she cut me off from the pain medication I would be beyond screwed.  The only way I can get out of bed and take care of my little girls everyday is because of those horrid little pills: pills that alleve my fatigue and pain enough to function like a semi-normal person....too bad they don't make my brain work better.

 

Anyway, I can rarely get ahold of my LLNP and when I am lucky enough to reach her receptionist/helper I leave a message and hope I will get a call back within a couple weeks.  Now for emergencies, that leaves me completely screwed.  Same for my kids.  Luckily my kids have not gotten as ill as I have so we have been spared that bullet so far.  I dread that time because I am terrified that we will bring them to the kiddy ER and they will find out I am treating my kids with abx, and that the abx has caused them to be really ill and then they take my kids away for wanton abuse. 

So, with all this latest herxing and feeling like death - specifically that I can't feel my arms, hands or feet and the nerve pain running rampant is absolutely, breathtakingly unreal.   After stopping my abx and not getting better after 2 weeks I finnally caved and left a message with my PCP about the pain and what to do since all the pills I have on hand are not making a dent: I already spoke to my LLNP and all I got was go 1/2 dose on my abx and detox more. 

 

I waited a for a call back and two days later my PCP's nurse called and told me that my PCP said that maybe from here on out my LLNP should be managing my pain.  Like I said earlier, with how strict they are on pain medications these days, THIS ISN'T A POSSIBILITY.  I spent all yesterday curled on the floor in a fetal position sobbing my heart out.  I am so glad we put the girlies in daycare so they didn't have to see me freaking out and get scared.  Even while I write this I am starting to tear up from the complete lunacy and total UNFAIRNESS of it all.  I am doing my part.  I am jumping through all the hoops.  I am putting my husband's job in jeapordy in order to try to make it to all these appointments, by all these specialists, just in order to satisfy my PCPs discomfort with Rxing me pain medication. 

 

It is such a total waste of health care dollars it isn't even funny.  And it all stems from the fact that my doc won't admit that I have Lyme.  I just feel absolutely devastated by all of this.  I just thank god that my kids aren't in this kind of pain and I really hope it never happens because I don't know who would help us.  I have to laugh a very twisted laugh to think that the outcome of my care is at the hands of 2 medical professionals who are in the middle of an ego war...my life, truly does not matter to them and that make me feel so bad I dont' think I could describe it.  Like I am worth less than nothing.  They are going to kill me and they don'' even care....they don't even care.

The Tales of a 1001 Drugs, aka More Whining about My Latest Lyme Herx

The fatigue has been unreal with this last herx.  Normally my pain meds take away the fatigue - which is a great added bonus because that fatigue is a killer - but this time they aren't making a dent anywhere.  I wish they had a better option for me than this.  I would love to take anything other than the pain meds if they helped.  I have tried probably over 40 medications in the last 4 years and the 2 pain meds I am on are the only ones that have helped at all.  Really getting nervous that my next dx will be MS.  Getting more and more MS symptoms, and while I know it is Lyme herx, I also know that the only way doctors will help you with your Lyme symptoms is by diagnosing it with something else.  How ridiculous is that??  At this point I probably have over 12 diagnosis for what is wrong with me.  Now doesn't that seem a bit odd why the doctors wont just admit it is Lyme? 

There are a lot of diagnosis that I refused to be labeled with too.  Initially when the doctors told me it was all in my head, that I was just depressed and anxious, they basically strong armed me into trying all kinds of anti-depressants and anti-anxiety pills.  Most of these pills had such awful side-effects that I could see why mentally ill people would choose their mental illness rather than these horrible meds.  2 or 3 of them, I forget there were so many, made me literally suicidal and raging within hours....scared the crap out of my husband and my family.  One minute Im a docile crybaby and the next the fire and brimstone devil himself.  So...after months and months of this, my Psychiatrist kind of threw up her hands and said, "Do you think you could be Bi-Polar?,"  I was like, "WHAAAAAT!?"  I have a step uncle who is Bi-Polar and I can guarantee you that was not my problem.  I told her I really didn't believe that the Bi-Polar disorder fit me...even a mild Bi-Polar.  She then told me that they often give people a diagnosis of Bi-Polar to patients when they cannot tolerate regular anti-depressants/anxiety meds.  Now...who the flippity, how the flippity...I wanna know who is the Brains behind this moronic abuse of scientific thinking?  Up until that time, I really had respected and liked my frustrated Psychiatrist.  Now...I got really, really, really scared.  It finally dawned on me that she doesn't know what the hell she is doing, either.  I could be running the show for how much progress we had made in two years.   Up until this point they all had me convinced I was losing my mind and that they could fix it with drugs that they couldn't really explain how they worked outside of the TV commercial soundbite you hear.  'My feel good brain hoses needed to be strangled so that my feel good balls would keep floating around and keep making me feel good...that sort of thing.' 

It took me awhile longer to start to trust what I was feeling this entire time...that I was SICK, physically sick, and that it was because I was sick so long that it was causing me to be depressed and anxious.  I did not know, at the time, that Lyme causes severe depression and anxiety.  I do believe I truly developed PPD and PTSD with the birth of my first child because of the physical and psychological trauma I experienced, but I know that if I had gotten a correct diagnosis of Lyme earlier then I could have saved myself 3 years of utter hell and suffering.  Of course I would have suffered anyway with the treatment...but I could have but I could have let my poor psyche off the hook and given it a break. 

Sorry folks...this post was supposed to go somewhere and I feel like I am just rambling and rehashing everything I have already posted so I am going to end it here.

I am hoping for peace for you all...and also that you listen to your gut when you feel like there is something amiss.  Our doctors, even our LLMDs do not know everything, nor do they have all the answers.  You need to be an advocate for yourself in all avenues and that is really hard to do.  If something isn't working then keep rattling your chains until these docs listen and help you change it.

My post to Katie Couric's query, "What was your worst health scare?"

I ran out of some of my useless, but better pain meds and now am having had to resort to using my less than better, but useless pain meds.  I am in so much pain that I begged  my husband to pay for daycare (really don't need to beg, I have a wonderfully supportive husband) for the next two days for our kids because I am really starting to lose. it.  I am in a pretty bad and dark place. Prolonged pain and debilitating symptoms really start to get to you after awhile, and it truly is hard to think of reasons to want to keep your life going. Feeling like I am, right now, always takes me a LOT by surprise because I really never think of myself as a depressed or suicidal person, and it is very scary when you get so worn down that ending your life feels like a better option than the physical and mental suffering you are currently enduring. I am truly and thankfully very blessed that I have my kids because, without them, I honestly don't know if I would have the inner strength to go through all of what I am in order to maybe, one day, years from now...get better.  Anyway, one of the many bits of note-worthy info that swim by me on the vast internet sea was Katie Couric's quest for more knowledge...too tired to even be ironic.  But since the Lyme community has been rallying to give this woman what she asked for, and I don't have the kids, I decided to do my part for the Lymie movement.  Anyway, here is what I posted - sorry as it is pretty redundant from what I have already posted.  Lucky for me that I have no short term memory - thank you Lyme - it is all fresh stuff for moi. 

          The worst health scare, bar none, is my, and my two daughter’s (age 2 and 4) current battle with Chronic and Congenital Lyme disease.  I have had Lyme disease for most of my life but didn't know what was wrong with me; my mom brought me to all kinds of doctors while I was growing up and none of them had any idea either.  I believe I contracted Lyme at the age of 4, after having eight ticks imbedded in my back, and again at the age of ten and again at 12.  I developed strange and severe symptoms after each incident but we had no idea Lyme disease even existed.  My main symptoms in childhood were; a non-stop headache (at no time do I not have a low-grade headache), constant migraines, ear infections, allergies, severe eczema, anxiety, stomach problems, fatigue, and joint pain.  The severity and frequency of my migraines has cost me a lot of jobs in my life.  After a botched C-section with my 1st daughter (I had no anesthetic) I got really, really sick.  I got very depressed and anxious to the point of mania.  I was  so fatigued that I couldn't stand up or hold my newborn baby for long periods of time: It felt like I was walking through neck high mud wherever I went, even brushing my teeth was a monumental task that would take me hours to accomplish.  I was initially diagnosed with Post Partum Depression and PTSD (from the birth trauma), and spent the last four year seeing dozens and dozens of doctors (literally), doing dozens of therapies, taking dozens of medications with horrible side effects, all to help me get well and nothing has worked to date.  The diagnoses that I have accumulated, since the birth of my 1st child, are: Post Partum Depression/Anxiety/OCD, PTSD, Anxiety, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Major Depression, Bi-Polar...and I am pretty sure my next diagnosis will be MS.  I found out that I had Lyme disease and two co-infections, Bartonella and Babesia, and that I had passed them to my beautiful children in utero.  We all found out we had Lyme in July of 2012.  My four year old daughter has been very sick since she was born.  She has had so much wrong with her that it would take a book to describe it all.  Her major symptoms include; extensive food allergies (allergic to over 40 foods that we know of), severe eczema, gross motor delay, neurological glitches like tics and a recent seizure, anxiety, Sensory Processing Disorder, Hypotonia, insomnia, rages that include severe emotional meltdowns (multiple times a day) that go beyond normal toddler tantrums, constant stomach aches, chronic constipation, joint pain and leg spasms, headaches, chronic ear infections, eye problems, sinus issues, sleep apnea, and extreme nightmares -  Her Neurologist was convinced at one point that she was going to show mild Cerebral Palsy on her MRI but the MRI came back clean and he was flabbergasted!  There are probably more symptoms that I am forgetting to include, but I have no short term memory from my Lyme illness so my brain function is really poor.  My sweet four year old has had to endure more pain and suffering in her short life than a lot of people experience in a lifetime.  My wily two year old seemed to be the healthiest of all of us initially.  She is the only one of the three that has been able to get a CDC positive for Lyme disease.  Since she was born her symptoms have been; rages, anxiety, OCD, Sensory Processing disorder, nightmares, neurological gross motor glitches that include falling episodes, allergies, bouts of extremely high fevers with no other symptoms  and then extremely low temperatures out of the blue, headaches and joint pain.  I don’t know if there is anything more horrible than your one year old holding their head or knee and screaming in pain.  As a mother I have had to watch my children suffer horribly and there is nothing I can do to help them.  You see we can’t get a doctor to help us because they all say that Chronic and Congenital Lyme disease does not exist.  We are forced to see a Lyme Literate practitioner in another state because she is the only person that will help us.  All of our medical expenses are pretty much out of pocket, and we pay for health insurance yet are unable to use it for any treatment related to our Lyme disease.  We have spent over 30 thousand dollars since I got really ill four years ago.  Every year we completely max out our Out Of Pocket expenses, and this is on top of paying for all of our Lyme treatment out of pocket.  Since I lost my job last year because I was too sick to work, I am now a stay at home mom and trying to take care of two sick girls while I am almost bed-bound for half of every month.  I am in constant and excruciating pain, and my cognitive abilities are so compromised by my illness that I don’t drive much anymore, and rarely leave the house.  We are very lucky in that I have my parents close by to help, my husband and I, take care of our girls.  I have a good friend that also comes over to babysit me when I am so ill that I am literally paralyzed on my bed and unable to eat, drink or use the bathroom for several days in a row.  We don’t go to the ER anymore, when this happens, and I will explain why later.  My husband has been an incredible support system through all of this.  He is single handedly keeping our ship from sinking.  Because I am so disabled, my husband will get up in the morning before work and get the girls fed, then will come home at lunch and feed them before getting them ready for their nap, and when he gets home he will make dinner for all of us and get our girls ready for bed.  Because of the massive amount of stress and responsibility on his shoulders he is also starting to crumble and it is taking a huge toll on him, mentally and physically.  Lyme disease is one of the only diseases that also comes with incredible political controversy.  In fact, the controversy over this disease is so wide-spread that most people with this illness end up losing a lot of their family and friends over it.  It is one of the most socially isolating and lonely illnesses I have encountered, because it is so hidden, and because of the politics and controversy behind it.  The controversy is so prevalent that it affects all avenues of your medical/health care once you are diagnosed with this illness.  For Example, the first time I needed to go to the Emergency Room for heart arrhythmia (caused by complications of my Lyme disease), my husband and I were literally berated and screamed at by my ER physician.  I wish that this incident was isolated but it isn’t.  If you ask any person with Lyme disease about their experiences with how they have been treated while seeking any and all medical care they will tell you this same story, of abuse and disrespect, over and over again.  Well I have gone on long enough but I BEG of you to do a story about Lyme Disease, and on those of us (our children especially) that are suffering from this horribly debilitating disease.  Please help us have a voice so that at least our children can get the medical help they need to live and experience life.  Thank you for listening. 

Here is the link if you want to post your story too.  Go Lymies!

http://www.katiecouric.com/lets-talk/what-was-your-worst-health-scare/

 

 

 

 

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.