Babesia and Bartonella

My son has a positive Bartonella result and and 'indefinite' for Babesia.  With his symptoms, I think that he most definitely has Lyme disease.  It would be nice if he could be properly treated for Babesia and Bartonella to see if improvement shows that he does indeed have Lyme.  So the results were not negative - just not quite strong enough on the Babesia front for a positive.  Sometimes, the immune system is so compromised that a postive test will never show up.

The allergy testing at Great Ormond Street has shown a very high IgE.  The average is up to 40 and his result is over 500.  I wonder what he is allergic to and if it is the Lyme underneath this hitting his immune system.  Guess, at the speed we are going, it will take months to find out.  I hope not as I want my son well again soon.

Slow progress

My son has now been on augmentin for 7 weeks - but I do not think that the dose is high enough and therefore progress is slow.  On the positive side, there is progress.  We have been into London 3 times this month and my son has undergone various examinations from a barium meal to an abdominal scan.  We do not yet know why his stomach hurts so much - but are following up the results from a stool sample that was sent away before he went onto antibiotics and that indicated possible Crohns or colitis.  The endoscope examination is still to come and not all blood results are back yet.

A sample of blood was, in addition, sent to Igenex in the States to be tested for Lyme disease and Bartonella. I could not afford for all the other co-infections to be tested for.  Those results are due this week.         I hope it is not one of these, but on the other hand it would explain a lot if any positives show up.  Testing for Lyme and its co-infections is very difficult to do though and tests sometimes give a false negative, I believe.  Lyme is often diagnosed on symptoms - a clinical diagnosis.

I wish I could afford to rent a rambling cottage by the seaside and disappear there with my family for the summer.  Some good fresh air would do us all good.

I battle on with the hope of finding a doctor who will take PANDAS and PANS seriously and give my son the proper care he needs.  A full set of blood tests would be a good start - but they  have not yet been approved by anyone here.

PANDAS in the news - Dr Bouboulis

http://www.dariennewsonline.com/health/article/Darien-doctor-gains-national-notoriety-411757.php#src=fb

Lyme Disease and Co-Infection Symptom Chart

http://www.lyme-symptoms.com/LymeCoinfectionChart.html

Paediatric Lyme Presentation

http://www.slideshare.net/dennis43/pediatric-lyme-disease

I have found several Lyme and other articles today

but haven't yet had time to read them.  I will store them here until I get a chance to browse:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://greendragonbotanicals.com/products/lyme-protocols/lb-core-protocol.html

http://www.latitudes.org/forums/index.php?showtopic=17397

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=14

http://www.nypost.com/p/news/local/item_OseCEXxo6axZ8Uyig17QKL/4

http://www.emaxhealth.com/1275/teen-suicide-attempts-rise-your-kid-risk

http://byronwhiteformulas.com/

http://www.survivingmold.com/diagnosis

http://onlinelibrary.wiley.com/doi/10.1002/ana.21756/pdf

OMG - Just got another bit of my own jigsaw

Just found out that steroids can really flame underlying Lyme - immunosupression from the steroid allows the bacterial infection to spread more freely in the body.  This could be what happened to my son in Sweden when he was given a high steroid dose in hospital for a nut allergy.  It would certainly explain a lot.  I am impatiently awaiting Lyme test results - they will not arrive for another couple of weeks.

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=14

A frustrated Lyme poem

What the heck is Lyme doing
In my life?
I was bitten, now it bites at me.

A hideous insect, as it starts
Then gets extra legs
Bloody stupid thing

It hid on me and spat out
Filth, under my skin
And off it dropped

My life is upside down
My heart, my brain
My body is worn out

I try to think and do things
But brain fog, thick and custardy
Clouds out my thoughts

Your name I cannot remember
What day did you say that
Today is?

I could once win the 100 metres
But now I cannot even find
My shopping list

Down the aisles I buy things
Again that I have already bough
Duplicates rotting in my fridge

I had a frozen shoulder and
It went and now I have
Tennis elbow both sides

My fingers are carpally
Typing is a pain and yet
I need support groups

My heart beats out of tune
I’m not in love, no lover awaits
Just ectopic pain

I eat, oh how I eat and
My waist expands
But I am always hungry

I will get up now, sluggish
And go about the day
With tight face muscles

When I do not smile
Do not say ‘it might not happen’
For it already has

And I am congenitally conjoined
With this illness that
I share with my kids

We struggle on and add
PANDAS and nobody believes
That we are not well

It sucks, this tick illness

Joshua's story - you tube coverage

http://www.youtube.com/watch?v=i0ItLVezuQQ&feature=endscreen&NR=1

Ruby - 100 days of PANDAS - post plasmapheresis improvements

http://www.youtube.com/watch?feature=iv&annotation_id=annotation_434195&src_vid=XFNM44v7lEg&v=o__ggTephdc

Obtaining antibiotics for PANDAS children

I haven't said much about my son lately - that is because all my energy (and money - paying doctors) has gone into getting long term antibiotic treatment for him.  He has improved since he started on augmentin 5 weeks ago - I really need someone to help me with the dosage and possibly another type of antibiotic to see if that works better.  We now have a lot of long chats but they are oppositional and quite difficult.  But my son has come back to me quite a lot and also has more to do with our pets (except his cat which he had already bonded with).  Sleep is still a big issue - he finds it hard to fall asleep, but the anxiety about going into the shower alone disappeared after the first 3 weeks.  The fight to get someone to oversee my son's treatment in this country continues.  We will win.  Blood tests to test for Lyme disease have been sent off and also Great Ormond Street Hospital is testing him for gut problems.  We have gone a step forward.  The second trip to London was also a success in terms of my son coping with it.  Again, we used first class travel and taxis; expensive but necessary.  I am pleased with progress.

Alternative Mental Health - great article

http://www.alternativementalhealth.com/articles/walshMP.htm

Is soy right for our families or should we feed them something else?

http://www.livestrong.com/article/516107-long-term-side-effects-of-soy-milk/#ixzz1wnFNRM93

Low Body Temperature/Chronic Fatigue Link - long

http://davidjernigan.qondio.com/chronic-fatigue-syndrome-and-low-body-temperature

Pyrolurea is interesting ...

http://www.youtube.com/watch?v=o1OJ87eA0Lg

PANDAS and Stuttering report

https://www.aacp.com/Abstract.asp?AID=9159&issue&page=C&UID

Methylation

I am just learning about methylation and this site is interesting:

http://www.dramyyasko.com/about-us/

A video about how Lyme, its co-infections and treatment work

http://www.youtube.com/watch?v=RTiWfyrNBwA&feature=related