Treating Children

[Guest guest]

Dani,

Yes I have seen success with my son and the diet, we also do supplements

due to the fact that his candidiasis is a rare form (chronic mucocutaneous

candidiasis) and he needs all the extra boost he can get.

Angie

[Guest guest]

Hello All - This is my first post.

My entire family is infected.

Son, aged 12.5 is currently the focus, due to his behavioral problems.

Rest of us have mild symptoms.

Son on ABX for over 24 months.

Gave ABX rest for one week: started him on tiny amounts of 1) Teasel tincture

(from a v. reliable source) and then Cat's Claw (again tincture - too dark for

my liking, but at least it is " Source Naturals "

I have done this at the minimum - taking it very slow.

OK that's the background, now the question.

After attending this protocol for about 7 days, gave him 1 tablet of

Resveratrol. (sorry too tired to look but I think it was 400mg)

Exactly ONE hour later he went into a RAGE, practically psychotic. This is

nothing new - as we think he's had Lyme since infancy - if not in utero and he

has been oppositional and defiant all his life - but the Jeckyl/Hyde quality to

this outburst was extreme.

I think that children present Herxes this way -- but there is so little info out

there about kids--

In any case, does anyone have a) exp. with Buhner protocol and children OR

experience of Resveratrol causing profound herxes?

(BTW- yes I am using a good source of Resveratrol - Thanks much.

[Guest guest]

Thanks for your reply. First: some background.

Lived in one of the most endemic places on the planet x 13 yrs. (See Pam

Wientraub's " Cure Unknown " on the endemic and ubiquitous problems w/

ticks in this area)

It was: Upstate NY. We lived in the woods.

Daily tick checks year long. Cats came into house w/A ROW OF baby ticks

attached to eyelids, bulging.

OCCASIONALLY, WE FOUND Tiny nymph ticks on bedsheets.

Deer everywhere. Whitefoot mice everywhere.

Husband: 3 rashes in ten years. (TREATED TO POINT OF SUPPRESSION)

Daughter: High + BEFORE IDSA and CDC changed band reporting. (TREATED,

TO POINT OF REMISSION-)

Son: Tested + won't go into that - it's complex

Me, Mom: rash, all typical symptoms in 2003 (TREATED TO POINT OF

REMISSION)

We have all been treated w/various ABX.

I am very lyme literate, know about testing, complexities, politics. I

am a trained Medical Anthropologist, reading medical literature is not

difficult for me.

OK on to specifics:

> >

>

> welcome to the group I don't have direct advice for you, but some

questions that might indirectly help ...

>

>

> > My entire family is infected.

>

> mostly out of scientific curiosity, especially regarding the

suggestion that your son may have Lyme from birth:

> - are you in a Lyme endemic area? WE WERE, BUT WE NO LONGER LIVE IN

THAT AREA. WE ARE IN CANADA NOW.

> - were all family members tested and found positive for LD, and with

what test (, Blot, PCR maybe?). I'm especially curious about how

the LD of your son was diagnosed.

----SON =+ BY CANADIAN WB - EXTREMELY RARE OCCURRENCE DUE TO THEIR

CRAPPY KITS

----REST OF US, ME NOW SERONEG ON IGENEX, BUT THOUGHT TO HAVE LUPUS

DAD= NO IGENEX BUT AWFUL CLINICAL PRESENTATIONS

DAUGHTER - NO IGENEX, BUT ADHD, PERCEPTUAL DIFFICULTIES, SPATIAL

REFERNCING PROBLEMS, AND MOST RECENTLY ODD JOINT PROBLEMS W/ NO APPARENT

IMAGING.

> Just to be sure, I'm not doubting your story because I have heard a

few similar cases in my own country; I'm just wondering what is going on

here.

>

> There are very few cases with evidence for LD infection that was

passed from mother to child. There are also some documented cases of

embryos that were infected by Borrelia and died before birth, possibly

because of this spirochete infection. Theoretically the baby can be

infected (get Borrelia from the infected mother) in the womb. We know

this sometimes happens with relapse fever, but with Lyme disease it

seems to be very rare.

IT WAS A FAMOUS LYME SPECIALIST IN CANADA AND ANOTHER FAMOUS LLMD WHO,

AFTER REVIEWING OUR HISTORY, AND SON'S SYMPTOM PICTURE FROM A V. EARLY

AGE, SUGGESTED THAT SON'S LYME COULD BE CONGENITAL - WHO KNOWS??

>

> There are other explanations for LD symptoms, e.g. the baby could

inherit the immune reaction against the Lyme bacteria from the mother,

without having actual infection. This could happen by epigenetics, or

from circulating Borrelia antigens.

>

> Another option is that the spirochete changed the baby's DNA shortly

after conception (or maybe even the egg/sperm DNA). It is suggested that

this mechanism is responsible for certain cases of 'heriditary''

schizophrenia and autism that occur in endemic regions.

>

> It is important to know if there is a real infection (even antibodies

do not prove that in such a case). ACCORDING TO DR. CHAS. JONES, ANY

SPECIFIC BAND PRESENT IN EITHER IGM OR IGG, ALONG W/CLINICAL SYMPTOM

PICTURE, ESP. WITH KNOWN TICK EXPOSURE OR BITE = REASON TO TREAT FOR BB.

ACCORDING TO JONES, ANY IGG PRESENT MEANS THAT THERE IS ANTI-BODY

ACTIVITY AS ALL IGG WAS ONCE IGM. ALSO, HE SAYS THAT SERO NEGS CAN MEAN

AN EVEN MORE ADVANCED, CYSTIC FORM IS PRESENT.

If there is NO real infection, ABX and herbs will be pretty useless and

only have some temporary influence on symptoms (e.g. most ABX have

anti-inflammatory action which will dampen pain etc.).

--- ARE YOU SUGGESTING THAT ONE MUST GO BY CLINICAL PICTURE AND NEVER

TRUST ANY WB TESTING? FOR WE HAVE ALL HAD MANY TICK BITES AND MUCH

RELIABLE TESTING.

>

> > I think that children present Herxes this way -- but there is so

little info out there about kids--

>

> I don't think this is usual, I have never heard it (but I guess it

happens, just like it can happen with adults).

-- I ASK THIS BECAUSE I AM IN TOUCH W/ANOTHER PARENT WHO IS LOOKING AT

BEHAVIORAL ISSUES IN RELATION TO TREATMENT AND HERXING. ALSO LOOKING AT

AVAIL. LIT FROM

PSYCHIATRIST AND MENTAL HEALTH PROFESSIONAL ON EAST COAST OF US.

ANY ANECDOTAL INFO ON KID'S HERXES MUCH APPRECIATED.

>

> > In any case, does anyone have a) exp. with Buhner protocol and

children OR experience of Resveratrol causing profound herxes?

> > (BTW- yes I am using a good source of Resveratrol - Thanks much.

>

> IMHO, Resveratrol is unlikely to cause severe herxes; again YMMV.

> Are you using Resveratrol pills (some of them have binders that could

cause reactions) or bulk herbs?

>---USING RESVERATROL TABS FROM SOURCE NATURALS/40 TOTAL

RESVERATROL/STANDARDIZED FROM POLYGONUM CUSPIDATUM ROOT EXTRACT

AGAIN THANKS FOR YOUR ANSWER- ANY INFO APPRECIATED. BTW SON IS ON KETEK

AND NOW INTRODCING HERBS FOR 2 WEEKS- TEASEL AND CAT'S CLAW, VERY VERY

SLOW RAMPING.

[Guest guest]

>

> Thanks for your reply. First: some background.

> Lived in one of the most endemic places on the planet x 13 yrs.

> It was: Upstate NY. We lived in the woods.

<...>

that sure sounds endemic

so I guess even without testing it is likely that everyone has been infected

(possibly multiple times).

>I am a trained Medical Anthropologist, reading medical literature is not

> difficult for me.

that seems like a pretty perfect education for sorting out these problems

> what test (, Blot, PCR maybe?). I'm especially curious about how

> the LD of your son was diagnosed.

> ----SON =+ BY CANADIAN WB - EXTREMELY RARE OCCURRENCE DUE TO THEIR

> CRAPPY KITS

I wondered if there had been a positive 'direct' Borrelia test like PCR test

because of the possible congenital for your son. But with the high likelyhood of

infection (judging from other family members) you can't rule out normal Bb

infection (at a later time) anyway.

> ----REST OF US, ME NOW SERONEG ON IGENEX, BUT THOUGHT TO HAVE LUPUS

> DAD= NO IGENEX BUT AWFUL CLINICAL PRESENTATIONS

> DAUGHTER - NO IGENEX, BUT ADHD, PERCEPTUAL DIFFICULTIES, SPATIAL

> REFERNCING PROBLEMS, AND MOST RECENTLY ODD JOINT PROBLEMS W/ NO APPARENT

> IMAGING.

I think those test results are pretty common for chronic lyme. I had a textbook

case Western Blot in 2006 (tick bite, EM and obvious lyme symptoms in 2004).

After one year of ABX treatment I had only IgG +IgM p41 bands, which is

officially negative. But spirochetes were still visible in my blood, and my

symptoms where relatively unchanged except for neurologic improvement.

We need better (other) tests ...

> IT WAS A FAMOUS LYME SPECIALIST IN CANADA AND ANOTHER FAMOUS LLMD WHO,

> AFTER REVIEWING OUR HISTORY, AND SON'S SYMPTOM PICTURE FROM A V. EARLY

> AGE, SUGGESTED THAT SON'S LYME COULD BE CONGENITAL - WHO KNOWS??

yes, difficult to say in this case. I wish they would study this issue as it

could be important (especially when assuming that the lyme can go unnoticed for

many years, e.g. until puberty stirs things up).

ACCORDING TO DR. CHAS. JONES, ANY

> SPECIFIC BAND PRESENT IN EITHER IGM OR IGG, ALONG W/CLINICAL SYMPTOM

> PICTURE, ESP. WITH KNOWN TICK EXPOSURE OR BITE = REASON TO TREAT FOR BB.

> ACCORDING TO JONES, ANY IGG PRESENT MEANS THAT THERE IS ANTI-BODY

> ACTIVITY AS ALL IGG WAS ONCE IGM.

I won't argue with Dr. because he is a great doc. Statistically he is

right that this is reason to treat.

But a child COULD have the antibodies without ever having had the actual

infection. Don't know for the specific case of Lyme disease (difficult to be

sure with the current flimsy testing), but it is known to occur for other

infections.

ALSO, HE SAYS THAT SERO NEGS CAN MEAN

> AN EVEN MORE ADVANCED, CYSTIC FORM IS PRESENT.

People with LD symptoms and seronegative can be the most severe cases.

With often people with high antibody values have the best chances, as this

shows that there immune system is overpowering the infection, so they may

recover even without ABX.

If the immune system cannot keep up with the infection you get a negative

(I'm assuming here that the symptoms are an indication for LD, of course people

could have similar symptoms without having actual Borrelia infection).

In my country we are trying to persuade the authorities to start detecting

immune complexes for Borrelia, instead of just free antibody; this should be a

much better indication for disease.

I'm not so sure about completely negative Western Blots. Most chronic people

have at least a few bands, even if they are not positive by the official CDC

definition. I hope we can move to PCR testing within the next years, as it

removes a lot of the uncertainty related to antibody response.

> --- ARE YOU SUGGESTING THAT ONE MUST GO BY CLINICAL PICTURE AND NEVER

> TRUST ANY WB TESTING? FOR WE HAVE ALL HAD MANY TICK BITES AND MUCH

> RELIABLE TESTING.

Symptoms and disease history (tickbite, EM etc.) is far more important than test

results IMHO. With your family it seems chronic infection (ineffective

treatment) is the most likely explanation.

My comment was related to possible congenital lyme. I have heard a few cases

where people claim they (or their children) have congenital lyme, and ABX was

totally ineffective. Most of these children are from families where other

members are infected as well, so it is difficult to know if the child has normal

infection or congenital lyme.

I don't know ANY case where the mother had proven lyme (prior to or shortly

after conception), where later infection of the child is unlikely (no known tick

bites/EM, non-edemic area), and where LD for the child has been proven with a

direct test like PCR (excluding the possibility that the LD is just some

inherited antibody response, and not an actual infection).

> > IMHO, Resveratrol is unlikely to cause severe herxes; again YMMV.

> > Are you using Resveratrol pills (some of them have binders that

> > could cause reactions) or bulk herbs?

> >---USING RESVERATROL TABS FROM SOURCE NATURALS/40 TOTAL

> RESVERATROL/STANDARDIZED FROM POLYGONUM CUSPIDATUM ROOT EXTRACT

The original Source Naturals had those binders about 2 years ago; it smells a

bit like licorice. Don't know about the current product.

[Guest guest]

> >

> > Thanks for your reply. First: some background.

> > Lived in one of the most endemic places on the planet x 13 yrs.

> > It was: Upstate NY. We lived in the woods.

> <...>

>

> that sure sounds endemic

> so I guess even without testing it is likely that everyone has been infected

(possibly multiple times).

>

>

> >I am a trained Medical Anthropologist, reading medical literature is not

> > difficult for me.

>

> that seems like a pretty perfect education for sorting out these problems

>

>

> > what test (, Blot, PCR maybe?). I'm especially curious about how

> > the LD of your son was diagnosed.

> > ----SON =+ BY CANADIAN WB - EXTREMELY RARE OCCURRENCE DUE TO THEIR

> > CRAPPY KITS

>

> I wondered if there had been a positive 'direct' Borrelia test like PCR test

because of the possible congenital for your son. But with the high likelyhood of

infection (judging from other family members) you can't rule out normal Bb

infection (at a later time) anyway.

>

> > ----REST OF US, ME NOW SERONEG ON IGENEX, BUT THOUGHT TO HAVE LUPUS

> > DAD= NO IGENEX BUT AWFUL CLINICAL PRESENTATIONS

> > DAUGHTER - NO IGENEX, BUT ADHD, PERCEPTUAL DIFFICULTIES, SPATIAL

> > REFERNCING PROBLEMS, AND MOST RECENTLY ODD JOINT PROBLEMS W/ NO APPARENT

> > IMAGING.

>

> I think those test results are pretty common for chronic lyme. I had a

textbook case Western Blot in 2006 (tick bite, EM and obvious lyme symptoms in

2004). After one year of ABX treatment I had only IgG +IgM p41 bands, which is

officially negative. But spirochetes were still visible in my blood, and my

symptoms where relatively unchanged except for neurologic improvement.

>

> We need better (other) tests ...

>

>

> > IT WAS A FAMOUS LYME SPECIALIST IN CANADA AND ANOTHER FAMOUS LLMD WHO,

> > AFTER REVIEWING OUR HISTORY, AND SON'S SYMPTOM PICTURE FROM A V. EARLY

> > AGE, SUGGESTED THAT SON'S LYME COULD BE CONGENITAL - WHO KNOWS??

>

> yes, difficult to say in this case. I wish they would study this issue as it

could be important (especially when assuming that the lyme can go unnoticed for

many years, e.g. until puberty stirs things up).

>

> ACCORDING TO DR. CHAS. JONES, ANY

> > SPECIFIC BAND PRESENT IN EITHER IGM OR IGG, ALONG W/CLINICAL SYMPTOM

> > PICTURE, ESP. WITH KNOWN TICK EXPOSURE OR BITE = REASON TO TREAT FOR BB.

> > ACCORDING TO JONES, ANY IGG PRESENT MEANS THAT THERE IS ANTI-BODY

> > ACTIVITY AS ALL IGG WAS ONCE IGM.

>

> I won't argue with Dr. because he is a great doc. Statistically he is

right that this is reason to treat.

> But a child COULD have the antibodies without ever having had the actual

infection. Don't know for the specific case of Lyme disease (difficult to be

sure with the current flimsy testing), but it is known to occur for other

infections.

>

> ALSO, HE SAYS THAT SERO NEGS CAN MEAN

> > AN EVEN MORE ADVANCED, CYSTIC FORM IS PRESENT.

>

> People with LD symptoms and seronegative can be the most severe cases.

With often people with high antibody values have the best chances, as this

shows that there immune system is overpowering the infection, so they may

recover even without ABX.

>

> If the immune system cannot keep up with the infection you get a negative

(I'm assuming here that the symptoms are an indication for LD, of course

people could have similar symptoms without having actual Borrelia infection).

>

> In my country we are trying to persuade the authorities to start detecting

immune complexes for Borrelia, instead of just free antibody; this should be a

much better indication for disease.

>

> I'm not so sure about completely negative Western Blots. Most chronic people

have at least a few bands, even if they are not positive by the official CDC

definition. I hope we can move to PCR testing within the next years, as it

removes a lot of the uncertainty related to antibody response.

>

>

> > --- ARE YOU SUGGESTING THAT ONE MUST GO BY CLINICAL PICTURE AND NEVER

> > TRUST ANY WB TESTING? FOR WE HAVE ALL HAD MANY TICK BITES AND MUCH

> > RELIABLE TESTING.

>

> Symptoms and disease history (tickbite, EM etc.) is far more important than

test results IMHO. With your family it seems chronic infection (ineffective

treatment) is the most likely explanation.

>

> My comment was related to possible congenital lyme. I have heard a few cases

where people claim they (or their children) have congenital lyme, and ABX was

totally ineffective. Most of these children are from families where other

members are infected as well, so it is difficult to know if the child has normal

infection or congenital lyme.

>

> I don't know ANY case where the mother had proven lyme (prior to or shortly

after conception), where later infection of the child is unlikely (no known tick

bites/EM, non-edemic area), and where LD for the child has been proven with a

direct test like PCR (excluding the possibility that the LD is just some

inherited antibody response, and not an actual infection).

>

>

> > > IMHO, Resveratrol is unlikely to cause severe herxes; again YMMV.

> > > Are you using Resveratrol pills (some of them have binders that

> > > could cause reactions) or bulk herbs?

> > >---USING RESVERATROL TABS FROM SOURCE NATURALS/40 TOTAL

> > RESVERATROL/STANDARDIZED FROM POLYGONUM CUSPIDATUM ROOT EXTRACT

>

> The original Source Naturals had those binders about 2 years ago; it smells a

bit like licorice. Don't know about the current product.

>

[Guest guest]

>

> The only value in this dx/symptom pic. is that knowing the duration of

infection might assist in protocol decisions.

> Unknown territory.

You have to know what is wrong for best treatment. Symptoms can give clues, but

we need better tests!! My guess is that both with congenital Lyme and with

chronic Lyme, some cases might be genetic damage caused by the Borrelia

prophage, and not a real infection. Such damage is probably permanent and might

cause 'auto-immune' like reactions in the body. In that case ABX or

antibacterial herbs would do no good, except maybe keep some of the symptoms

like inflammatin down.

On the other hand, I'm sure many other chronic lyme cases are simply persistent

infection (often not detected by the blood tests because the spirochetes are in

the tissues or cells; or the evidence is ignored because of flawed IDSA

reasoning about antibody response).

Just like the risk of sexual transmission, this really needs to be sorted out

with solid research, instead of the current regurgitating of a few flawed

literature studies.

> Meanwhile, Very interested in your ideas about PCR. My most recent

investigations had shown that PCR is not all we had hoped - but I WANT very much

to hope that PCR might strike more reliable results.

I'm convinced the IDSA propaganda about unreliable PCR tests is wrong, and based

on lack of knowledge and commercial ties (e.g. the fact that most IDSA cronies

have no PCR patents, most of the Borrelia PCR research is from Europe or other

US institutions). The good thing about PCR is that it does NOT depend on a

functional immune system. The chance of getting a false-positive result is

almost zero: positive result = infection.

PCR has its own problems, but IMHO it is progressing quickly. One of the labs in

my country says that using urine PCR, they have sensitivity similar to blood

tests (= relatively low chance of false-negative result). Urine testing is

controversial, but their results (working together with some German labs) look

really good and hopefully they will be published next year. I like urine testing

because it is convenient for the patient and you theoretically get the DNA

debris from anywhere in the body, also if the chetes are no longer in the blood

stream.

I think within 1-2 years detection of the various Bb strains will be more common

with PCR testing, which could help with prognosis and treatment (e.g. if the

specific Bb strains is sensitive to certain ABX type).

> WHAT DO YOU THINK ABOUT C-57? ONLY AVAIL. IN STATES, PER STRIKER LAB =

> LABCORP AT THIS MOMENT IN TIME (2010)

I don't think it proves Bb infection - it shows immune problems that CAN be

related to Bb infection or other causes. I don't consider this a 'Lyme test',

but maybe it has some value to monitor progress during treatment (but even that

is doubted in the literature).

> Also, regarding Testing: my Son was positive from the following labs: Clongen,

Quest, IGenex, and Canadian WB. He was + on LabCorp in 2005, subsequently

NEG as per (corrupt) CDC WB done at QUEST in 2005.

> Then tested again in 2007: ID in New York did not accept CDC criteria; so

interpreted the presence of certain highly specific Borrelia species Bands

(measuring the proteins specific to Borrelia) as a Positive and recommended IV

Ceftriaxone. But....

The problem with serologic tests is that after you have tested positive once

(which is obvious here), additional serologic testing is of little value. The

literature clearly shows that people CAN test positive, both with IgM and IgG

antibodies, for years after disease symptoms have disappeared.

The only value of serologic testing at a later time is that the bands in the

Western blot can change and give clues about progress of the disease process. If

you get new bands (usually higher bands from what I remember) this is a strong

clue for persistent infection. For this you need a good lab like IgeneX that

reports all the bands, and you need to use the same lab/procedure as with the

previous test.

> I will be ordering testing for family and self hopefully in early part of

2011.

> As we are in Canada, it is not difficult to send blood to the USA.

> Do you have any suggestions or ideas about what I might order? Dr. liked

Fry and Clongen back when I last spoke to him in 2009...

I'm from Europe so I have no direct experience with any of these labs. I have

heard that the situation in Canada is pretty bad regarding testing; let's hope

they wake up because Lyme is quickly moving North from the US ...

From what I have heard, IgeneX, Fry and Clongen are all good labs; probably each

has their own specialty. It might be interesting (but probably expensive) to get

a blood smear examination from Clongen, to see what is going on (spirochetes, Bb

cyst forms, other unknown infections?).

If there is a real (persistent) spirochete infection, instead of some kind of

genetic or auto-immune disorder, you should be able to see that in the blood

smear. My own experience is that spirochetes can be visible in the blood while

both serologic testing and PCR find nothing ... in such a case it is impossible

to way if you are dealing with 'mutated' Borrelia's or some other (unknown)

spirochete, but at least you know for sure that there is a problem.