Wednesday, May 1, 2013

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. 

















 

3 comments:

  1. Just found your blog...have you ever considered treating with a rife machine? You could all be treated at the same time, and it can be done with or without antibiotics alongside. Facebook has a "rifing Lyme" group, and there is other info out there on it. Sometimes antibiox can cause Lyme to change to "cyst form" and rifing is not as likely to do that, esp. If taking herbs that keep Lyme from creating those biofilms-turmeric, krill oil, magnesium oil. Cumanda is also good for killing Bart. I have Bart and Lyme, and have been rifing about 4 months and it has been more effective than antibiox in my opinion (did those 14 mos)

    ReplyDelete
  2. Hiv disease for the last 3 years and had pain hard to eat and cough are nightmares,especially the first year At this stage, the immune system is severely weakened, and the risk of contracting opportunistic infections is much greater. However, not everyone with HIV will go on to develop AIDS. The earlier you receive treatment, the better your outcome will be.I started taking ARV to avoid early death but I had faith in God that i would be healed someday.As a Hiv patent we are advise to be taking antiretroviral treatments to reduce our chance of transmitting the virus to others , few weeks ago i came on search on the internet if i could get any information on Hiv treatment with herbal medicine, on my search i saw a testimony of someone who has been healed from Hiv her name was Achima Abelard and other Herpes Virus patent Tasha Moore also giving testimony about this same man,Called Dr Itua Herbal Center.I was moved by the testimony and i contacted him by his Email.drituaherbalcenter@gmail.com We chatted and he send me a bottle of herbal medicine I drank it as he instructed me to.After drinking it he ask me to go for a test that how i ended my suffering life of Hiv patent,I'm cured and free of Arv Pills.I'm forever grateful to him Drituaherbalcenter.Here his contact Number +2348149277967...He assure me he can cure the following disease..Hiv,Cancer,Herpes Virus,Lyme Disease,Epilepsy, ,Bladder Cancer,Colorectal Cancer,Breast Cancer,Kidney Cancer,Leukemia,Lung Cancer,Non Hodgkin Lymphoma,Skin Cancer,Lupus,Uterine Cancer,Prostate Cancer, fibromyalgia ,ALS,Hepatitis,Copd,Parkinson disease.Genetic disease,Fibrodysplasia disease,Fibrodysplasia Ossificans Progressiva,Fluoroquinolone Toxicity Syndrome,Liver/Kidney Inflammatory,Men/Woman infertility, bowel disease ,Huntington's disease ,Diabetes,Fibroid...

    ReplyDelete
  3. My name is hoover, my 18 years old daughter, Tricia was diagnosed of herpes 3 years ago. ever since then,we have been going from one hospital to the other. We tried all sorts of pills but all efforts to get rid of the virus was futile. The blisters kept on reappearing after some months. My daughter was making use of Acyclovir tablets 200mg. 2 tablets every 6hours and fusitin cream 15grams. and H5 POT. Permanganate with water to be applied 2x a day but all still show no result. So I was on the internet some months back, to sought for any other means of saving my only child. just then, i came across a comment on dr imoloa herbal treatment and decided to give it a try. i contacted the him and he prepared some herbs and sent it to me together with guidelines on how to use the herbs through DHL courier service. my daughter used it as directed dr imoloa and in less than 14days, my daughter regained her health.. You should contact Dr imoloa today directly on his email address for any kind of health challenge; lupus disease, mouth ulcer, mouth cancer, fever, hepatitis A.B.C., syphilis, diarrhea, HIV/AIDS, Huntington's Disease, back acne, Chronic renal failure, addison disease, Chronic Pain, Crohn's Disease, Cystic Fibrosis, Fibromyalgia, Inflammatory Bowel Disease, fungal nail disease, Lyme Disease, Celia disease, Lymphoma, Major Depression, Malignant Melanoma, Mania, Melorheostosis, Meniere's Disease, Mucopolysaccharidosis , Multiple Sclerosis, Muscular Dystrophy, Rheumatoid Arthritis, Alzheimer's Disease, parkison disease, vaginal cancer, epilepsy, Anxiety Disorders, Autoimmune Disease, Back Pain, Back Sprain, Bipolar Disorder, Brain Tumour, Malignant, Bruxism, Bulimia, Cervical Disk Disease, Cystic Fibrosis, Hypertension, Diabetes, asthma, Inflammatory autoimmune-mediated arthritis. chronic kidney disease, inflammatory joint disease, impotence, feta alcohol spectrum, Dysthymic Disorder, Eczema, Chronic Fatigue Syndrome, constipation, inflammatory bowel disease. and many more; contact him on email- drimolaherbalmademedicine@gmail.com./ also on whatssap-+2347081986098.

    ReplyDelete