complicated questions -- opinions?

[Guest guest]

The GI doctor says that my son should not consume any lactobacillus because of

the danger of lactobacillus sepsis. Her reasoning is that he has

immunodeficiency (receives IVIG for Common Variable Immune Deficiency) and a

leaky gut, and presently has lactobacillus overgrowth and suspected D-Lactic

Acidosis. She is concerned that the lactobacillus will (or are) leaving his GI

tract, entering his blood stream and could cause harm elsewhere. I found an

article about lactobacillus sepsis...

http://www.medscape.com/viewarticle/470278_print

Apparently Elaine had addressed this issue, but I need more information other

than " Elaine says it's okay " if you know what I mean.

Has anyone on this list had lactobacillus overgrowth and confirmed D-Lactic

Acidosis? We have not been able to confirm the D-LA part, as I cannot seem to

coordinate a lab draw at the moment it is occuring. He has had 2 episodes

earlier this week and neither were at a time we could leave where we were and

get a blood draw. I tried to provoke it yesterday and he was only borderline on

having symptoms, and I don't want to have him poked unecessarily. The day

before, he had his IVIG infusion and I am wondering if he is having these

episodes more at the end of an infusion cycle, but they are harder to provoke

right after his infusion? I guess that would make sense as his immune system is

higher functioning right after he receives an infusion, but as the number of

IgGs drop, he might be more prone to something like D-Lactic Acidosis. What did

happen yesterday (when I tried to provoke it) was while he was eating his

yogurt, he started breathing these funny short rapid

puffs of air. I usually don't watch him eat as he has eating issues as it is

and I don't want to make them worse by making him feel like he is being watched.

That was pretty alarming to me as I remember previously thinking that the only

symptom of D-LA he didn't have was hyperventilation. I will give him yogurt

once more today (with the video camera handy!) and make sure it wasn't just some

sort of wierd coincidence.

Well these questions are probably over everyone's heads I'm sure, but if there

is anything anyone has to offer, I am all ears.

-

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Dear , I'm sorry I don't have any answers on this, but would you mind if I

asked you for some information -- how often do you repeat the IVIG, and how long

does it seem to last before wearing off? Do you time the next infusion to be

before the last one totally wears off?

Thanks,

Rob or Sunseri wrote:

The GI doctor says that my son should not consume any lactobacillus

because of the danger of lactobacillus sepsis. Her reasoning is that he has

immunodeficiency (receives IVIG for Common Variable Immune Deficiency) and a

leaky gut, and presently has lactobacillus overgrowth and suspected D-Lactic

Acidosis. She is concerned that the lactobacillus will (or are) leaving his GI

tract, entering his blood stream and could cause harm elsewhere. I found an

article about lactobacillus sepsis...

http://www.medscape.com/viewarticle/470278_print

Apparently Elaine had addressed this issue, but I need more information other

than " Elaine says it's okay " if you know what I mean.

Has anyone on this list had lactobacillus overgrowth and confirmed D-Lactic

Acidosis? We have not been able to confirm the D-LA part, as I cannot seem to

coordinate a lab draw at the moment it is occuring. He has had 2 episodes

earlier this week and neither were at a time we could leave where we were and

get a blood draw. I tried to provoke it yesterday and he was only borderline on

having symptoms, and I don't want to have him poked unecessarily. The day

before, he had his IVIG infusion and I am wondering if he is having these

episodes more at the end of an infusion cycle, but they are harder to provoke

right after his infusion? I guess that would make sense as his immune system is

higher functioning right after he receives an infusion, but as the number of

IgGs drop, he might be more prone to something like D-Lactic Acidosis. What did

happen yesterday (when I tried to provoke it) was while he was eating his

yogurt, he started breathing these funny short rapid

puffs of air. I usually don't watch him eat as he has eating issues as it is and

I don't want to make them worse by making him feel like he is being watched.

That was pretty alarming to me as I remember previously thinking that the only

symptom of D-LA he didn't have was hyperventilation. I will give him yogurt once

more today (with the video camera handy!) and make sure it wasn't just some sort

of wierd coincidence.

Well these questions are probably over everyone's heads I'm sure, but if there

is anything anyone has to offer, I am all ears.

-

---------------------------------

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protection.

[Guest guest]

IgG has a half life of 24 days, so to keep it continuous in the system it is

given on average every 21 days. You can try different infusion schedules and do

labs just prior to the IV to measure the levels of IgG in the blood and see what

is working for him. It's very much trial and error! 21 days works for us an

yes you try to keep levels steady -- no roller coaster effect desired. That

being said, I know kids who get an infusion every week, 2 weeks, 4 weeks and 6

weeks -- it is highly individual.

By the way, I was able to provoke the D-LA behavior yesterday (so it is not

associated with the infusion schedule). He is now refusing the yogurt, so I

gave him probiotic and he became immediately symptomatic.

-

Lake wrote:

Dear , I'm sorry I don't have any answers on this, but would you

mind if I asked you for some information -- how often do you repeat the IVIG,

and how long does it seem to last before wearing off? Do you time the next

infusion to be before the last one totally wears off?

Thanks,

Rob or Sunseri wrote:

The GI doctor says that my son should not consume any lactobacillus because of

the danger of lactobacillus sepsis. Her reasoning is that he has

immunodeficiency (receives IVIG for Common Variable Immune Deficiency) and a

leaky gut, and presently has lactobacillus overgrowth and suspected D-Lactic

Acidosis. She is concerned that the lactobacillus will (or are) leaving his GI

tract, entering his blood stream and could cause harm elsewhere. I found an

article about lactobacillus sepsis...

http://www.medscape.com/viewarticle/470278_print

Apparently Elaine had addressed this issue, but I need more information other

than " Elaine says it's okay " if you know what I mean.

Has anyone on this list had lactobacillus overgrowth and confirmed D-Lactic

Acidosis? We have not been able to confirm the D-LA part, as I cannot seem to

coordinate a lab draw at the moment it is occuring. He has had 2 episodes

earlier this week and neither were at a time we could leave where we were and

get a blood draw. I tried to provoke it yesterday and he was only borderline on

having symptoms, and I don't want to have him poked unecessarily. The day

before, he had his IVIG infusion and I am wondering if he is having these

episodes more at the end of an infusion cycle, but they are harder to provoke

right after his infusion? I guess that would make sense as his immune system is

higher functioning right after he receives an infusion, but as the number of

IgGs drop, he might be more prone to something like D-Lactic Acidosis. What did

happen yesterday (when I tried to provoke it) was while he was eating his

yogurt, he started breathing these funny short rapid

puffs of air. I usually don't watch him eat as he has eating issues as it is and

I don't want to make them worse by making him feel like he is being watched.

That was pretty alarming to me as I remember previously thinking that the only

symptom of D-LA he didn't have was hyperventilation. I will give him yogurt once

more today (with the video camera handy!) and make sure it wasn't just some sort

of wierd coincidence.

Well these questions are probably over everyone's heads I'm sure, but if there

is anything anyone has to offer, I am all ears.

-

---------------------------------

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protection.

[Guest guest]

Kind of a follow-up question regarding bacterial overgrowth. I looked at an

older CDSA test from my son, and he had no growth of Bifidobacteria. I am going

to get a current one run, but do some of you monitor/compare CDSA with SCD & if

so did anyone start with no Bifidobacteria, but then end up with normal amounts

without supplementation? I'm trying to imagine how that could happen?

-

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[Guest guest]

Hi ,

<<Has anyone on this list had lactobacillus overgrowth and confirmed D-

Lactic Acidosis?>>

I don't recall anyone having confirmed lactic acidosis. Here is a

thread about it from the archives

http://lyris.dundee.net/read/messages?id=264318#264318

If you have trouble reading this let me know and I'll send you the

emails offlist (it is a very long thread).

I read through it and found it very interesting. What foods are you

using/supplements etc...

Sheila, SCD Feb. 2001, UC 23yrs

mom of and

[Guest guest]

Hi ,

Have you heard of this: " CoEmzyme Q10 to

reduce lactic acid... " ? from

http://health.groups.yahoo.com/group/pecanbread/message/67591

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

<< ...suspected D-Lactic Acidosis. >>

[Guest guest]

He doesn't have elevated Lactic acid (that was normal) -- it's the D-lactic that

is the concern.

-

Sheila Trenholm wrote:

Hi ,

Have you heard of this: " CoEmzyme Q10 to

reduce lactic acid... " ? from

http://health.groups.yahoo.com/group/pecanbread/message/67591

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

<< ...suspected D-Lactic Acidosis. >>

---------------------------------

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[Guest guest]

I was able to read it, but it contradicts the published case studies on pub

med/medscape and the like. There is at least one documented case of probiotic

causing D-LA. It involved a g-tube-fed patient who was on a formula that was

switched to one that contained probiotic. The treatment in that case was simply

to switch back to the previous formula. All of the articles seem to agree that

probiotics are ultimately a good thing for D-LA, but you might have to use an

antibiotic first then replenish with the proper probiotic.

He has no diarrhea when he eats meat and water and a minimal amount of a

handful of carbs. The stools are formed, but are pale and float, which shows a

problem remains. It's hard to say what his diet is as he is getting so sick of

meat that he is losing his appetite and he will not eat yogurt anymore and has

refused bananas for over a week, but then ate one today (so tomorrow I will see

how that went over as he ate it at bedtime). He is eating a stick of butter

daily (his choice & his sister does the same thing -- they both keep begging for

butter). Romaine lettuce leaves were agreeable to him, but now he is sick of

them. He is so limited on what does not cause diarrhea that he is refusing to

eat foods that are okay, because he is sick of them. It seems that keeping the

servings very small is more important than what the carb is at this point (legal

carbs).

His little sister has gotten over the loose stools doing SCD, but she also has

pale stools that float. The were getting paler and paler until she had one that

was just about white (I have never seen anything quite like it!). My friend who

is an ER nurse said to take her to the ER. Instead, I called the GI doctor on

call who asked about the change in diet and her instruction were to give her

something that I know will cause her diarrhea and if the color returns, she does

not need to go to the ER, but should follow up with her doctor. I gave her raw

carrots and dates and she had brown loose stools, so we did not go to the ER,

but the GI doctor can't see her until September. She is back to pale (but not

white) stools that float.

Is is normal for stools to go from diarrhea to pale floaters before they

become normal on SCD or do my kids have something else going on?

-

Sheila Trenholm wrote:

Hi ,

<<Has anyone on this list had lactobacillus overgrowth and confirmed D-

Lactic Acidosis?>>

I don't recall anyone having confirmed lactic acidosis. Here is a

thread about it from the archives

http://lyris.dundee.net/read/messages?id=264318#264318

If you have trouble reading this let me know and I'll send you the

emails offlist (it is a very long thread).

I read through it and found it very interesting. What foods are you

using/supplements etc...

Sheila, SCD Feb. 2001, UC 23yrs

mom of and

---------------------------------

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[Guest guest]

Hi ,

<<I was able to read it, but it contradicts the published case

studies on pub med/medscape and the like. There is at least one

documented case of probiotic causing D-LA. It involved a g-tube-fed

patient who was on a formula that was switched to one that contained

probiotic. The treatment in that case was simply to switch back to

the previous formula. All of the articles seem to agree that

probiotics are ultimately a good thing for D-LA, but you might have

to use an antibiotic first then replenish with the proper probiotic.>>

That is kind of what I was thinking last night (it was pretty late

for me when i posted). Have you thought of doing either an

antibiotic or natural antibiotic to lower bacteria levels and use the

foods he reacts to either the least or not at all to get him on good

footing before reintroducing good bacteria?

<<He has no diarrhea when he eats meat and water and a minimal amount

of a handful of carbs. The stools are formed, but are pale and

float, which shows a problem remains.>>

Is there a lot of oil/fat in his diet? I went through a period

similar to this earlier this year and had to eat my very basic diet

to get things under control. I am now back to eating yogurt and

everything else. One thing I did was I didn't stop taking S

boulardii while I gave up the yogurt. I wanted to make sure that no

nasties got the upperhand to overgrow.

<< It's hard to say what his diet is as he is getting so sick of

meat that he is losing his appetite and he will not eat yogurt

anymore and has refused bananas for over a week, but then ate one

today (so tomorrow I will see how that went over as he ate it at

bedtime). He is eating a stick of butter daily (his choice & his

sister does the same thing -- they both keep begging for butter). >>

The butter may be giving calories but probably contribute to the

floating stool (his body is probably having trouble digesting that

much fat).

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

[Guest guest]

Hi ,

> Has anyone on this list had lactobacillus overgrowth and confirmed

D-Lactic Acidosis?

Hi this is a long post. I'm wondering if we should talk

privately or via the discussion group, because our cases are so

unique. We have a lot to talk about!! Please note

that " Newautismdiet@... " is not my private e-mail handle. If

you want my private e-mail handle I can send it to you if you wish.

Just send the request through the pecanbread discussion group.

Sorry it took me so long to respond to this post. Yes, I believe

that I have the above, although the docs weren't looking for it when

I was suffering through the worst of the symptoms. They thought that

I had " Guillain Barre Syndrome " and so they didn't test for the D-

Lactate. When I was hyperventilating due to feeling that I wasn't

getting enough air, the problem was attributed to " panic attacks. "

When I was hyperventilating and suffering from ataxia, systemic

weakness, and the profound feeling that I was on the verge of passing

out, I am certain I was suffering from acidosis of some form, most

likely the D-Lactate form. Given the fact that I have trouble

digesting carbs and have noticed correlations through the years

between the ingestion of certain foods (i.e. any non low carb foods),

followed by the onset of symptoms that bear a striking resemblance to

D-Lactic acidosis, I am quite certain the acidosis I was suffering

from was of the D-Lactate form. Currently, I am suspecting I have an

overgrowth of D-Lactic producing bacteria, since I am able to keep

the worse and most frightening symptoms of D-Lactate overload at bay

through diligent food restricting efforts. Coincidentally, I, like

your son, can tolerate very few foods from the carbohydrate family.

According to the abstract for " D-lactic Acidemia and Aciduria in

Pediatric and Adult Patients with Short Bowel Syndrome " the authors

conclude " that D-lactate is frequently present in serum of SB

patients even in: the absence of acidosis " , which might explain why

my serum anion gap indicator wasn't elevated, even though I have had

many blood draws throughout my life.

You were correct in an earlier post that you need to halt the

ingestion of D-Lactate producing bacterial strains. In people

suffering from our problem, most likely the ingestion of L.

Acidophilus and others D-Lactate producing strains will not act in

the role of a probiotic. Instead, their ingestion will likely

exacerbate symptoms of bacterial overgrowth since we tend to have a

low pH that fosters growth of the D-Lactate producing forms. I

noticed that you are feeding your son a yogurt/probiotic. Probiotic

therapy can be used to try to crowd out the D-Lactate microbes for

people who suffer from D-Lactate acidosis. What bacterial strains

are you using in your yogurt and/or probiotic?

I do not have short bowel syndrome, but I do have a complicated

health history. I definitely have Celiac Disease, and may also have

soy enteropathy in addition to multiple foods allergies and/or

intolerances. I was also infected with Campylobacter at one point in

my life. I have been on the SCD since March 2003. Don't get

discouraged about the length of the time I've been on the SCD. When

I first went on the SCD I thought I had IBS. A year later when I

tried to get off the SCD, I suffered through some serious setbacks,

then realized I had Celiac Disease. Later on still, I discovered

that I had serious problems with soy. And now, there has been the

recent discovery of D-Lactate bacterial overgrowth. So I haven't yet

been on an optimized form of the SCD, because, through the years,

I've been stumbling upon these diagnoses on my own with very little

help from the medical establishment. I would like to add that most

of my doctors have been concerned with my case, and were frustrated

that they weren't able to help me figure out the root cause of my

problems.

I notice that your son and daughter have pale stools. That topic was

address in this link from the The Gastroenterology and Liver Diseases

Forum. http://www.medhelp.org/forums/gastro/messages/36055.html

Interestingly, my gastro doc was suspecting that I have problems with

my pancreas, but we haven't yet conducted the tests. The floating

stools that you described in one of your posts are supposed to be

indicative of problems related to fat malabsorption. My stool tests

also showed that fat was present in my stools. Are your children

taking enzymes to combat the fat malabsorption? If so, which ones?

I have trouble with certain enzymes and enzyme preparations, and I

have to administer them in a very careful methodical fashion which I

can share with you. I can also share test results from my gastro doc

which may or may not have a bearing on your son's case.

I will be sending you the SCD foods that agree with me in another

post.

- Sally G.

[Guest guest]

I am so amazed to read all of this. I suggest we speak on the group initially

so that if anyone else has these issues, there will be a record of it happening

to at least 2 other individuals! I have been at a stand still with my son, not

sure how to proceed as it seemed clear nobody else was experiencing what he is

(and to a lesser degree, his sister).

I don't have time to write more, but I will have time to sit at the computer

later tonight.

-

newautismdiet wrote:

Hi ,

> Has anyone on this list had lactobacillus overgrowth and confirmed

D-Lactic Acidosis?

Hi this is a long post. I'm wondering if we should talk

privately or via the discussion group, because our cases are so

unique. We have a lot to talk about!! Please note

that " Newautismdiet@... " is not my private e-mail handle. If

you want my private e-mail handle I can send it to you if you wish.

Just send the request through the pecanbread discussion group.

Sorry it took me so long to respond to this post. Yes, I believe

that I have the above, although the docs weren't looking for it when

I was suffering through the worst of the symptoms. They thought that

I had " Guillain Barre Syndrome " and so they didn't test for the D-

Lactate. When I was hyperventilating due to feeling that I wasn't

getting enough air, the problem was attributed to " panic attacks. "

When I was hyperventilating and suffering from ataxia, systemic

weakness, and the profound feeling that I was on the verge of passing

out, I am certain I was suffering from acidosis of some form, most

likely the D-Lactate form. Given the fact that I have trouble

digesting carbs and have noticed correlations through the years

between the ingestion of certain foods (i.e. any non low carb foods),

followed by the onset of symptoms that bear a striking resemblance to

D-Lactic acidosis, I am quite certain the acidosis I was suffering

from was of the D-Lactate form. Currently, I am suspecting I have an

overgrowth of D-Lactic producing bacteria, since I am able to keep

the worse and most frightening symptoms of D-Lactate overload at bay

through diligent food restricting efforts. Coincidentally, I, like

your son, can tolerate very few foods from the carbohydrate family.

According to the abstract for " D-lactic Acidemia and Aciduria in

Pediatric and Adult Patients with Short Bowel Syndrome " the authors

conclude " that D-lactate is frequently present in serum of SB

patients even in: the absence of acidosis " , which might explain why

my serum anion gap indicator wasn't elevated, even though I have had

many blood draws throughout my life.

You were correct in an earlier post that you need to halt the

ingestion of D-Lactate producing bacterial strains. In people

suffering from our problem, most likely the ingestion of L.

Acidophilus and others D-Lactate producing strains will not act in

the role of a probiotic. Instead, their ingestion will likely

exacerbate symptoms of bacterial overgrowth since we tend to have a

low pH that fosters growth of the D-Lactate producing forms. I

noticed that you are feeding your son a yogurt/probiotic. Probiotic

therapy can be used to try to crowd out the D-Lactate microbes for

people who suffer from D-Lactate acidosis. What bacterial strains

are you using in your yogurt and/or probiotic?

I do not have short bowel syndrome, but I do have a complicated

health history. I definitely have Celiac Disease, and may also have

soy enteropathy in addition to multiple foods allergies and/or

intolerances. I was also infected with Campylobacter at one point in

my life. I have been on the SCD since March 2003. Don't get

discouraged about the length of the time I've been on the SCD. When

I first went on the SCD I thought I had IBS. A year later when I

tried to get off the SCD, I suffered through some serious setbacks,

then realized I had Celiac Disease. Later on still, I discovered

that I had serious problems with soy. And now, there has been the

recent discovery of D-Lactate bacterial overgrowth. So I haven't yet

been on an optimized form of the SCD, because, through the years,

I've been stumbling upon these diagnoses on my own with very little

help from the medical establishment. I would like to add that most

of my doctors have been concerned with my case, and were frustrated

that they weren't able to help me figure out the root cause of my

problems.

I notice that your son and daughter have pale stools. That topic was

address in this link from the The Gastroenterology and Liver Diseases

Forum. http://www.medhelp.org/forums/gastro/messages/36055.html

Interestingly, my gastro doc was suspecting that I have problems with

my pancreas, but we haven't yet conducted the tests. The floating

stools that you described in one of your posts are supposed to be

indicative of problems related to fat malabsorption. My stool tests

also showed that fat was present in my stools. Are your children

taking enzymes to combat the fat malabsorption? If so, which ones?

I have trouble with certain enzymes and enzyme preparations, and I

have to administer them in a very careful methodical fashion which I

can share with you. I can also share test results from my gastro doc

which may or may not have a bearing on your son's case.

I will be sending you the SCD foods that agree with me in another

post.

- Sally G.

---------------------------------

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