Trying to explain co-infections to my husband....

[justinekno]

My husband is trying to understand how our son can be diagnosed with PANDAS but could potentially also have Lyme. If Lyme mimics PANDAS, how can our dr be so confident that it is PANDAS until we rule out Lyme? Is it because of our labwork, family history and Cunningham results? Can Lyme cause the same test results? Someone help me to explain to him because I am starting to doubt what I am saying!

[peglem]

My husband is trying to understand how our son can be diagnosed with PANDAS but could potentially also have Lyme. If Lyme mimics PANDAS, how can our dr be so confident that it is PANDAS until we rule out Lyme? Is it because of our labwork, family history and Cunningham results? Can Lyme cause the same test results? Someone help me to explain to him because I am starting to doubt what I am saying!

I'm not an expert, but my understanding is that Lyme causes immune problems that make its victims more susceptible to other infections and autoimmune disorders. So some of what may be listed as Lyme symptoms could actually be symptoms caused by things that Lyme "invited" in.

[PacificMama]

I’m not familiar with the story of how your son came to be diagnosed with PANDAS.

I think sometimes it can get a bit convoluted trying to pull it all apart… PANDAS or PITAND? Strep? Lyme? Myco? Other? And quite honestly, I’m not sure how much lyme is on the radar screen of the different PANDAS doctors.

 

What we are talking about is an infectious agent as the cause of a collection of symptoms. What infectious agent(s) will then determine treatment.

 

In the end, the label doesn’t matter. What matters is whether your son is responsive to the correct antibiotic treatment. (and possibly IVIG when warranted).

 

Regarding lyme or similar co-infection (and these are simply called co-infections because they are often contracted along with lyme, but can certainly be contracted individually):

 

You can have lyme alone.

You can have lyme and a coinfection.

You can have lyme, and strep.

You can have lyme, and myco.

You can have lyme and [fill in the blank for untold others]

You can have a co-infection alone

You can have a co-infection and strep

And on and on and on – layer upon layer – possibility upon possibility

 

 

If you do indeed have lyme, THEN LYME IS THE UNDERLYING PROBLEM AND MUST BE ADDRESSED . It weakens an immune system so that other infections that come along (like strep) can take hold. You may indeed test positive for strep. You may see exacerbations when exposed to strep. But if you have lyme then that is your most urgent problem. Nothing will be fixed until you fix that.

 

And yes, you can test with high CamK, and still have lyme as your issue. I think Michael/Tampa has posted that this was the case for him. The fact is, the Cunningham test doesn’t test/account for lyme.

 

One more thing, lyme alone (or co) will give you every single PANDAS symptom you may be familiar with. Lyme alone will give a person mild neuro-psych symptoms such as anxiety, tics, ocd. Or lyme alone will send a person into rages and full-blown psychosis resulting in institutionalization. THERE IS A LOT OF LITERATURE about the neuro-psych manifestations of lyme. Google “neuropsychiatric lyme” and see what pops up. (I’m sorry, I don’t know your sons symptoms… I’m only saying that so people understand that lyme alone will do this).

 

I've rambled on... sorry. Hope that helps explains things!

[sf_mom]

Lyme is a intercellular bacteria and inhibits the white blood cells ability to fight additional bacteria so it is not surprising a child would have difficulties fighting off additional bacteria or viruses. Unfortunately, Strep can also be intercellular sometimes and it will inhibit the white blood cells in a similar fashion.

 

In my humble 'mother only' opinion PANDAS needs to be treated 'Lyme like' from an antibiotic perspective. LLD use specific combo'd antibiotics to attack the cell casing and intercellular structure to eradicate these difficult bacteria's. So, even if it is only intercellular strep or a tough strain of strep you are dealing with I think their philosophies apply.

 

I thought I'd list a few symptoms outlined in a paper by Dr. Brian Fallon:

 

The plethora of psychiatric problems associated with Lyme disease were

first reviewed in 1990 in the European medical literature by Drs.

Kohler [12] and Omasits. [17] Kohler attempted to categorize the

psychiatric symptoms by stage, listing depressive mood in early

disease, organic personality disorders in mid-stage disease, and

organic psychoses, dementia, and anorexia in the later phase of the

illness. Omasits stated that psychiatric manifestations can be

predominant and that the clinical spectrum of Lyme disease ranges from

agitated depressive states with suicidal ideas to the clinical picture

of dementia. A review of the medical literature [8] revealed that, in

addition to the disorders listed by Kohler and Omasits, Lyme disease

appear to be capable of causing syndromes which manifest as personality

change, depersonalization, mania, hallucinations (auditory, visual, and

olfactory), paranoia, catatonia with stupor and mutism, somatization

disorder, obsessive compulsive disorder, violent outbursts, panic

attacks, and disorientation.

 

In children and adolescents with neurologic Lyme disease, behavioral or

mood disturbances are the second most frequently reported symptom. [1]

Common neuropsychiatric symptoms include headaches, fatigue, difficulty

with concentration in school, irritability, oppositional behavior, and

new onset anxiety disorders. When the onset of illness is not dramatic,

but characterized by gradually increasing fatigue, disinterest, and

inattention, children may begin to label themselves as incompetent as

they realize they can no longer keep up with the rest of their

classmates academically. While developmental and family issues always

need to be considered when there is a change in a child's behavior or

mood, in endemic areas Lyme disease should be considered as well,

particularly because delays in diagnosis are associated with greater

chronicity.

 

-Wendy

Edited July 22, 2010 by SF Mom

[justinekno]

This is great information. I will have my husband read it!

 

I agree that the "label" doesn't matter as long as you get treated but it somewhat sounds like you need to know it's Lyme so you know how to treat. From what I've heard, IVIG may not be as successful if you have Lyme so the Lyme should be treated first?

 

My son's main symptoms are an eye tic, short term memory issues, coordination, handwriting and some mild OCD along with anxiety.

 

In your experience, if you thought your child contracted Lyme in utero, would you test yourself and your child, or just your child? I have a child in college too so I need to watch what I spend! And would you do co-infections?

 

 

In the end, the label doesn’t matter. What matters is whether your son is responsive to the correct antibiotic treatment. (and possibly IVIG when warranted).

 

If you do indeed have lyme, THEN LYME IS THE UNDERLYING PROBLEM AND MUST BE ADDRESSED . It weakens an immune system so that other infections that come along (like strep) can take hold. You may indeed test positive for strep. You may see exacerbations when exposed to strep. But if you have lyme then that is your most urgent problem. Nothing will be fixed until you fix that.

 

One more thing, lyme alone (or co) will give you every single PANDAS symptom you may be familiar with. Lyme alone will give a person mild neuro-psych symptoms such as anxiety, tics, ocd. Or lyme alone will send a person into rages and full-blown psychosis resulting in institutionalization. THERE IS A LOT OF LITERATURE about the neuro-psych manifestations of lyme. Google “neuropsychiatric lyme” and see what pops up. (I’m sorry, I don’t know your sons symptoms… I’m only saying that so people understand that lyme alone will do this).

 

I've rambled on... sorry. Hope that helps explains things! [/font]

Edited July 22, 2010 by justinekno

[PacificMama]

My rambling probably made things even more confusing

Yes, of course it is absolutely critical to be able to get the diagnosis of lyme so you can treat. It's valuable for insurance purposes, and valuable for school issues. And it's much easier to deal with ins, school, etc with a lyme diagnosis than with a PANDAS diagnosis. Not right, but that's the way it is right now.

What I was more speaking to was the idea when it is lyme + additional infections. The labels get confusing... is it lyme, is it pandas, is it pitand? In those cases, once you get the lyme and/or Coinfection diagnosis, i say forget sorting out the labels and get going on the appropriate antibiotic treatment under the care of an experienced lyme doctor (llmd). He/she is skilled at treating the potentially multi-infectious person.

 

It sounds like you had lyme yourself at one time? Are you symptomatic?

This is a pretty extensive symptom list:

http://www.canlyme.com/patsymptoms.html

 

I think the most important thing is for you to do as advised by ignenex and run the western blot on your son. But today, get the doctor referral names for your area (that I linked to before) and get an appointment scheduled (there are long wait times!). Ask the doctor's office if they will order up the tests for you for your future appointment. You hopefully should have test reults back by the time of the appointment. At the appointment I would ask him/her as to coinfections and testing of yourself.

 

 

This is great information. I will have my husband read it!

 

I agree that the "label" doesn't matter as long as you get treated but it somewhat sounds like you need to know it's Lyme so you know how to treat. From what I've heard, IVIG may not be as successful if you have Lyme so the Lyme should be treated first?

 

My son's main symptoms are an eye tic, short term memory issues, coordination, handwriting and some mild OCD along with anxiety.

 

In your experience, if you thought your child contracted Lyme in utero, would you test yourself and your child, or just your child? I have a child in college too so I need to watch what I spend! And would you do co-infections?

 

[MichaelTampa]

It is difficult to sort through the, is it PANDAS, or is it lyme question. It really can be both. Lyme will go in there an reprogram your DNA to make you not as able to make correct antibodies, and in that sense it really can cause PANDAS. Of course PANDAS can make you weak and more susceptible to lyme and vice versa as well.

 

I think the things that really distinguish PANDAS and lyme are:

- CD57 test results very low is lyme

- severe neuropsych symptoms every time exposed to someone with strep infection is PANDAS

 

FYI, my CamKinase was 180-something, and I had lyme at the time, so the CamKinase does not mean it there is not lyme involved. When I came off abx for lyme, one of the first things I noticed was increased sneezing and phlegm and all that, and I really think that's a big clue that I have more than just lyme, that I still am unable to make antibodies to strep or myco or whatever. Whether it causes neuropsych symptoms for me, honestly not sure at this point.

 

Michael

[sf_mom]

I need to clarify that Lyme can still be involved when a child is responsive to strep with a sudden on-set of symptoms (PANDAS)

 

- severe neuropsych symptoms every time exposed to someone with strep infection is PANDAS

[MichaelTampa]

Yes, agree absolutely.

 

I need to clarify that Lyme can still be involved when a child is responsive to strep with a sudden on-set of symptoms (PANDAS)

 

- severe neuropsych symptoms every time exposed to someone with strep infection is PANDAS

[smartyjones]

It is difficult to sort through the, is it PANDAS, or is it lyme question. It really can be both.

 

 

i wanted to throw in some thoughts as my son had clear evidence of strep - - ASO of 898 and positive throat culture at time of onset, CT scan showing all sinus cavities infected(not cultured but dr assumed strep) -- and later diagnosis of Lyme -- i think with some kids the issue then become infectious agents causing the trouble, not that they have pandas, specifically from strep.

 

most Lyme drs believe Lyme is so invasive and detrimental to the system, it leaves it open to "invite" other infections, be them parasitic, bacterial or viral. there are also the co-infections that can be transmitted by the tick concurrently with the Lyme.

 

ds had a known strep infection at 22 months, 2.5 years prior to onset. i'd never seen a tick on him previous to onset and after - picked one off him that was moving. we live in an epidemic state.

 

did he have Lyme that engaged an improper reaction to strep? did he have colonized strep that exploded when Lyme hit him? does he have a genetic predisposition to pandas reaction and coincidentally got Lyme? did i pass something to him while pregnant? sometimes, my head spins with the chicken or the egg (although, i know it doesn't really matter) and how could he possibly have so much crap going on in his body. . his dr believes there's not a way to know -- just that somewhere along the line, his immune system took a hit from something and left the door open for everything else -- for him, toxoplasma gondii and cytomeglalovirus along with low level lead and radon issues also.

 

i did get the sense at the OCDF conference, that the experts are aware of these multiple issues that can cause trouble. they seemed committed to discovering what is going on and what to do. keeping the BBB closed seems key -- i wonder if that is the difference between those that have troubles and those that don't with common viruses/bacteria. (like herpes, a large % of the population has toxoplasma or cytomeglalovirus but is not adversely affected)(however, i wonder if they are, they just don't know it's that or it's very low level) or, is he not really affected by these either, it's still the strep or lyme?

 

ds had such clear evidence of strep, i really didn't think he had lyme.. but a friend whose kids and she had lyme wouldn't let it drop with me. when ds didn't seem to be really on a healing path, i suggested we revisit Lyme and dr referred us to a dr schooled in Lyme.

 

way back at initial diagnosis of strep by useless ped (pandas by behavioral therapist), ds was first put on a 5 day course of azith which was horrendous. then switched to keflex and nystatin and had 100% remission in about 3 days. here's what i now think -- only out of my head, no science really to back anything up. i think he had Lyme and strep, possibly smouldering for who knows how long. not sure he ever fully kicked the strep at 22 months. something then pushed it further and we saw typical pandas symtpoms. or was it that he had smouldering strep and the lyme pushed the symptoms. i can make room for the possiblity that the azith was a herx. i think he had theses other infections but the behaviors we initally saw were a result of the strep. the keflex took care of the strep and thus, remission. however, the other infections were still there/ not fully eradicated and he couldn't recover fully.

 

i realize i'm babbling -- what i'm trying to get at was, i don't think he had Lyme masquerading as pandas. i think he had Lyme and pandas and cytomeglovirus and toxoplasma. my hope is in the future, a kid presents with symptoms and there is a protocol to discover what infection (s) are going on. there seems to be movement in that direction but it's still a long way off.

 

then of course. . . what to do about it? for us, we're working on clearing the infections. maybe not eradicating but moving to a level that is not detrimental for his body. if we were seeking consultation elsewhere, the advice may differ. so i think you have to take in the advice you're given and decide for your child what you think is best. as frustrating as it is to get differing opinions, i think at this stage of knowledge with this condition, it's best to seek all the knowledge and then make the decision that you feel fits your situation.

[justinekno]

I had my husband read all of these posts and it really helped him (and me!) understand. After reading them, he said, so we need to get the Lyme testing done, and visit a Lyme dr, if it's positive, to go after the Lyme before we do anything else. You guys helped the light bulb go on for him!

 

We have an appt with our regular dr to have the IGenex testing done for my son on Monday. Our dr felt that was a good "first step" before testing for the co-infections and myself.

 

Thank you again.

 

This is great information. I will have my husband read it!

 

[lfran]

Anyone know an LLD in Los Angeles? I emailed ilads.org, and there are none very close (within an hour, which is okay, but I would have thought in a city the size of LA there would be more. Of course, there are probably not a lot of ticks in an urban desert!)

[justinekno]

Can Lyme cause high CamK without having PANDAS?

 

 

And yes, you can test with high CamK, and still have lyme as your issue. I think Michael/Tampa has posted that this was the case for him. The fact is, the Cunningham test doesn’t test/account for lyme.