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Child exhausted & very thirsty after short exertion

Sherezade

Guest
Messages
97
I had a appointment at De Meirleir yesterday. He says it is probably bartonella. Since I have a very red skin in the face and chest, it is a sign of overvascularisation.
Bartonella prevents your veins to adapt to a physical effort. That's probably why my little boy collapses after a strong physical effort.

Bartonella is difficult to detect he says since it cells divide only once a month. There are many bartonella species but only two can be detected with conventional methods. I tested positive in 2008 but negative since so my doctors and I thought it was gone.

DML collaborates with a lab to check for all species via a PCR test in the DNA of the blood. In 5 weeks we'll have the results. If it is positive, I'll have my 3 children tested as well. Two are sick and one is sleeping up to 14 hours a day with night sweats and pain in his feet. Also a sign of bartonella.

Other signs of bartonella: nightmares, pain in the shins, anxiousness, some people have stretch marks, ...

The test costed me 180 + 85 euro in total.

Marlene, what do you know about Bartonella transmission? If you test positive, would know how did you get it in the first place?

I ask because whatever i have is very very contagious (by air, by saliva) So, in my mind, that rule out Lyme, and other bacterias like Bartonella.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Very sorry to hear about your children being sick Marlene :( .

Some other things come to mind with your post about him and I think should be ruled out

1/ some kind of diabetes?

2/ low blood volume (will cause thirst)
He probably should have a tilt table test to find out if he has dysautonomia which can happen with low blood volume eg POTS (it can also cause vomiting due to the affects on autonomic system). My POTS dont do well at all to exercise as as soon as I get warm, my POTS gets worst and exercise makes one get warm and makes the surface veins dilate (less blood then to brain.. collapse). Id think an OI issue like this quite likely. Vomiting may happen with POTS. (Something like POTS can be a secondary condition to many other illnesses).

Electrolyte imbalance can be more easily caused if one has POTS.. if he drank too much water his sodium may of gone too low http://en.wikipedia.org/wiki/Hyponatremia .. that can cause vomiting and collapse too (and is highly dangerous).

3/ Collapsing out of blue and vomiting makes me think of possible Addisons disease (low cortisol issue). Addisons crisises which in many arent picked up until they've had several life threatening episodes.. it which can cause severe dehydration due to vomiting (or diarrhea or both) before Addisons is diagnosed.
Exercise (or stress) can trigger off an Addisons attack if ones cortisol is too low. (I have no idea thou if Addisons disease can cause thirst if one isnt vomiting or has diarrhea).
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Marlene, what do you know about Bartonella transmission? If you test positive, would know how did you get it in the first place?

I ask because whatever i have is very very contagious (by air, by saliva) So, in my mind, that rule out Lyme, and other bacterias like Bartonella.

This is a very informative document about different types of bartonella and its transmission:
www.ncagr.gov/oep/oneMedicine/noms/2010/Breitschwerdt_Edward_Bartonellosis_The Hidden_Epidemic.pdf

Have you been checked for chlamydia pneumonia?
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
hello tania

yes it is horrible when our children are sick. My youngest child is the most touched. If it is bartonella, all my children have it.

I have the typical rash since I'm 12 years old;
my children never slept when they were a baby;
my oldest son has Hashimoto;
I had a special rash during my second pregnancy;
my second child had to be hospitalized in intensive care after birth due to infection of unknown origin;
he has very high levels of eosinophiles and nobody knows why;
I had a bone tumor 13 y ago and the bone never healed;
my veins break easily during operations and I even needed a blood transfusion once;
I had all kind of viruses reactivated since 2003 like mono, CMV, parvo, adeno as well as chlamydia pneumonia, mycoplasma, ...
I tested positive for bartonella in 2008 but my doctor said it was nothing, I was bedridden by then.
My last test was positive for babesia but negative for Lyme.

If I test positive for bartonella again, I'll accept antibiotics with both hands this time. I tried all the rest.
And I'll have my children tested as well as my partner ...

Thanks for the tip for Addison, I'll check it out as well as diabetes insipidius.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
hello tania

yes it is horrible when our children are sick. My youngest child is the most touched. If it is bartonella, all my children have it.

I have the typical rash since I'm 12 years old;
my children never slept when they were a baby;
my oldest son has Hashimoto;
I had a special rash during my second pregnancy;
my second child had to be hospitalized in intensive care after birth due to infection of unknown origin;
he has very high levels of eosinophiles and nobody knows why;
I had a bone tumor 13 y ago and the bone never healed;
my veins break easily during operations and I even needed a blood transfusion once;
I had all kind of viruses reactivated since 2003 like mono, CMV, parvo, adeno as well as chlamydia pneumonia, mycoplasma, ...
I tested positive for bartonella in 2008 but my doctor said it was nothing, I was bedridden by then.
My last test was positive for babesia but negative for Lyme.

If I test positive for bartonella again, I'll accept antibiotics with both hands this time. I tried all the rest.
And I'll have my children tested as well as my partner ...

Thanks for the tip for Addison, I'll check it out as well as diabetes insipidius.

There are similarities here.
I had to a blood transfusion one time when a minor surgery went wrong and they couldnt stop me from bleeding (complication of getting my tonsils out).

The last doctor I went to thought she saw signs of babesia on my skin.. she took a photo (its on my upper back) to show me and I had strange marks there (I wish I had a copy of the photo she took to show people). Im currently about to be tested for lyme (and have lyme test kit here).. and I guess if it shows up.. I'll then get tests for the lyme coexisting things too eg the babesia (due to the denial of these things being in Australia it is hard to get testing for lyme and its coexisting infections.. Im paying for my lyme test and will have to save up to have other tests done).

One of my children had severe complications of not being able to fight a common virus (which ended up her needing 16-19 surgeries due to the issues that caused). She went throu hell with that virus for about 4? years.

Low thyriod issues run in my family (not my immediate family thou..but I have 3 blood relatives who have thyriod issues).

I have reacting viruses.. 3 times I had a reactiving virus showing last year..... (I suspect the CMV I carry may of be reactiving a times too along with the EBV.. I had severe mono in the past)

chlamydia pneumonia Im currently waiting to hear back of a blood test result.. I finally got a doctor to test me for it. (if I do too much a cough is one of my ME/CFS symptoms and this year a reactiviting virus thing has now made me have to go onto a asthma puffer at times). I havent been tested for parvo and many other things so who knows what else Ive got going on.

I really hope your family can sort it all out.
 

Seven7

Seven
Messages
3,444
Location
USA
U know Marlene, the more I can differentiate the CFS from OI the more I realize something was not right w me my whole life from the OI side. I never tolerated the sun as a child, I get weird muscle pain, I could never run, I could do certain type of exercise not others...