Chronic Infection

[Guest pandas16]

If you have a chronic infection, do you have to feel sick? For those of you who are treating chronic infections, do you have any other physical signs of an illness that won't clear? How have you come to the conclusion that your son/daughter has a chronic infection? cough fever, etc...? Do you only see PANDAS symptoms? Couldn't PANDAS symptoms just be an indicator of PANDAS....? Could the abx be helping because abx like zithromax modulate the immune system to some extent? Is herxing maybe not herxing at all? Doctors have told me that there are certain antiboitics such as minocycline that worsen autoimmune disease because they stimulate the immune system. When the immune system is stimulated in someone with an autoimmune disease--- they become symptomatic.

 

Just a couple of questions I've been pondering about. Any thoughts?

Edited March 2, 2011 by pandas16

[butterflymom]

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Edited February 3, 2016 by tampicc

[Fixit]

If you have a chronic infection, do you have to feel sick? For those of you who are treating chronic infections, do you have any other physical signs of an illness that won't clear? How have you come to the conclusion that your son/daughter has a chronic infection? cough fever, etc...? Do you only see PANDAS symptoms? Couldn't PANDAS symptoms just be an indicator of PANDAS....? Could the abx be helping because abx like zithromax modulate the immune system to some extent? Is herxing maybe not herxing at all? Doctors have told me that there are certain antiboitics such as minocycline that worsen autoimmune disease because they stimulate the immune system. When the immune system is stimulated in someone with an autoimmune disease--- they become symptomatic.

 

Just a couple of questions I've been pondering about. Any thoughts?

 

i would realy love to know the answer to this...as per history i posted about ds paternal side and their reaction to biaxin specificaly and the pen forms..which i did not know about till 2 days ago..

but seems to correlate to ds extreme ramp on same abxs

 

ps..ds grand mother has lupus..

i found something about mino's not to be used with such condtions

 

going to talk to lyme doc in minute and very concerned going forward..but if i could believe in true herx then fine

ds was still hitting self in head pretty severly this am...

but 24 hours after hd vanco...screeches are waaayyyy down almost none...but as with prior expreinces have some other more subtle ones around..that i hope will diminish over the next few weeks..again as per prior experience..

and the hitting has come down some.......

 

unfortunaley..just to let you know i am not making this stuff up... the guy on plane today asked if he was having seizures..i then went into a little panda info session..he seemed intrigued...did not think till after, as i have 3 kids on my own in airport..he was nurse at a childrens hospital...he would of made a good pa for pit/pans lymes

 

ps ...can you post this question on the lymes site

Edited March 2, 2011 by Fixit

[eljomom]

A-men, tampicc!!

Edited March 2, 2011 by eljomom

[eljomom]

I also wonder about the "herxing"---that maybe it's just a bad reaction to an antibiotic. I took Levaquin a few years ago for a major cough that would not go away. I had been in bed, feeling horrible for days, and I mean SICK, SICK. Within an hour of taking first dose, I felt like I was perfectly fine...energy, etc. Now I KNOW my illness was not healed in an hour. But then after a few hours, I had the reverse effect, and got very depressed. Did the same thing the next day after dose....after third day, I called the doc and said I didn't care if I never got well, but I wasn't taking another dose of that medication. She said she rarely rx's it (an on-call doc did it) for that reason...so sometimes I do wonder if people are just reacting badly to the extremely high doses of multiple abx (that's usually when there's a herx, right??)

 

But truly, I am right there with pandas16 and tampicc---is it chronic infection we are trying to get to, or autoimmune. And if pandas is what it is, then it's the latter, so likelihood of abx being a cure seem SLIM>

[sf_mom]

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Edited March 3, 2011 by SF Mom

[sf_mom]

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Edited March 3, 2011 by SF Mom

[Guest pandas16]

Sorry, meant to specifically respond to Tampicc.

 

There are some thought to be PANDAs, treated for PANDAs, found Lyme and have been successfully treated and are now rotating off antibiotics in less than a year (lyme treatment). One child with a very high CAM Kinase has been off antibiotics for 4 months and maintaining wellness. Many more children are trending much better when Pex and IVIG were unsuccessful in bringing full remission of symptoms and finally discovered MCIDS 'multiple chronic infection disease syndrome'. More of these parents will come forward as they gain confidence and fear of relapse fades. Unfortunately, no one knew to test for Lyme/co-infections last year this time.

 

We've been treating my older son for LD since August 2010. He was treated for PANDAS for one year previous - 3 hdIVIG. He currently has one symptom which is a mild cough that is thought to be related to Bartonella. This cough cropped up after a rotation in antibiotics in Jan. specifically an antibiotic that crosses the BB called CeDax. Yes, these infection cross the BB just google 'strep in the brain' and you'll soon realize they have found brain abscess positive for Streptococcus in the brain. Many other bacteria inclusive of Lyme cross the BB as well. Once the cough remits he will be symptomless. They will hold protocol for several months thereafter and then start the process of rotating off antibiotics entirely. There are plenty of Lyme children that presented with neuropsychiatric symptoms only that have been successfully treated well in advance of my son and the case studies are well documented.

 

Here is one of the better articles on Mycoplasma. It can take 9 to 24 months to clear chronic mycoplasma with rotating antibiotics. Article has been previously posted by me.

 

http://www.drgregemerson.com/fact-file/mycoplasma

 

-Wendy

 

 

Do you mean to say that PANDAS is caused by strep in the brain and not molecular mimicry?

[P_Mom]

PANDAS 16,

 

To your original questions...yes.

 

And, it is not strep in the brain. Read Cunningham's studies on PANDAS and molecular mimicry.

Edited March 3, 2011 by P.Mom

[eljomom]

So how do you test for "chronic mycoplasma?" Is it with titers? This again does not necessarily mean they have chronic infection, I think..so curious if there is a specific test for myco. p.

 

Sorry, meant to specifically respond to Tampicc.

 

There are some thought to be PANDAs, treated for PANDAs, found Lyme and have been successfully treated and are now rotating off antibiotics in less than a year (lyme treatment). One child with a very high CAM Kinase has been off antibiotics for 4 months and maintaining wellness. Many more children are trending much better when Pex and IVIG were unsuccessful in bringing full remission of symptoms and finally discovered MCIDS 'multiple chronic infection disease syndrome'. More of these parents will come forward as they gain confidence and fear of relapse fades. Unfortunately, no one knew to test for Lyme/co-infections last year this time.

 

We've been treating my older son for LD since August 2010. He was treated for PANDAS for one year previous - 3 hdIVIG. He currently has one symptom which is a mild cough that is thought to be related to Bartonella. This cough cropped up after a rotation in antibiotics in Jan. specifically an antibiotic that crosses the BB called CeDax. Yes, these infection cross the BB just google 'strep in the brain' and you'll soon realize they have found brain abscess positive for Streptococcus in the brain. Many other bacteria inclusive of Lyme cross the BB as well. Once the cough remits he will be symptomless. They will hold protocol for several months thereafter and then start the process of rotating off antibiotics entirely. There are plenty of Lyme children that presented with neuropsychiatric symptoms only that have been successfully treated well in advance of my son and the case studies are well documented.

 

Here is one of the better articles on Mycoplasma. It can take 9 to 24 months to clear chronic mycoplasma with rotating antibiotics. Article has been previously posted by me.

 

http://www.drgregemerson.com/fact-file/mycoplasma

 

-Wendy

[sf_mom]

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Edited March 3, 2011 by SF Mom

[JAG10]

Can you reference the specific article you are referring to?

 

The only info I could find about strep abscess wasn't relevant in that the infection made its way to the brain via skull fracture from an accident.

[sf_mom]

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Edited March 3, 2011 by SF Mom

[butterflymom]

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Edited February 3, 2016 by tampicc

[JAG10]

Somebody help me out here...

 

Now we are talking about strep pneumonea? I thought we established this wasn't the same as strep gA?

 

Does Dr Cunningham or Dr Swedo talk about this at all and where?