Wednesday, May 1, 2013

Bart Treatment Update for Tots and I

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.

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 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

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


Thursday, March 21, 2013

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.

Thursday, February 28, 2013

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 what? 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. 

Monday, February 18, 2013

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 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. 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 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. 

Friday, February 1, 2013

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 

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.

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.

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

Tuesday, January 29, 2013

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.