Lyme, Strep and Neuropsych Manifestations

[PacificMama]

I just thought I would post an interesting coincidence from yesterday. I get regular postings via email from a lyme parents group (these are all people whose children are receiving treatment for lyme and/or infections such as myco, bartonella etc.). There was an initial posting from a mom asking parents if their children regularly test positive for strep (strep A in her case), as her children regularly did. Several people posted back that yes, their children also regularly tested positive for strep. Just wondering about the connection… and the possibility (that has been raised here before) that some of our kids are loaded down with multiple infections. (I do not know the details of Dr. Cunningham’s study, but would also be interested on thoughts as to how active lyme (or similar) infection would also affect CamK).

 

Since I am one of the voices here representing non-strep infections causing tics/ocd (known to some as PITAND), I wanted to post some brief information for anyone who is still sorting through the potential triggers (but has likely eliminated allergies/diet/environment/hereditary).

 

Neuropsychiatric manifestations of lyme disease have been well documented, researched and written up for many years now. These symptoms include OCD, rage, cognitive deficits, memory problems, anxiety, sleep disorders and on and on. For all of the doctors out there on the front line treating lyme and these other infections, this is all very commonplace and not at all unusual. Symptoms can resolve or improve with the correct combination of antibiotics, given for the appropriate duration.

 

For anyone out there whose child (or themselves) presented with any of these symptoms – particularly following some sort of initial illness of any kind -- please take a look at the following 2 links. Your symptoms may have had sudden onset, or appeared slowly and increasingly. There may or may not be other physical symptoms in addition to the neurological ones.

 

To see a list and links of just how much literature exists on neuropsych lyme:

http://www.lymeinfo.net/neuropsych.html

 

To see a short, 2 page brochure put out by ILADS (International Lyme and Associated Diseases Society) for psychiatrists called “Psychiatric Lyme Disease: What psychiatrists should know about lyme/tick-borne diseases”. (A quick diagnostic overview.)

http://www.ilads.org/lyme_disease/Psychiat...chure_08_08.pdf

 

***************************************************************************

Lyme is transmitted via a tick bite, and is the most common and fastest growing vector borne disease in the United States (and Europe). While there are certain endemic areas, it has been documented in 49 states. There are 20,000 newly documented cases each year per the CDC, but this number is probably closer to 200,000 new per year due to faulty reporting standards. Other tick-transmitted infections are mycoplasma, bartonella, babesia, Ehrlichiosis, and rocky mountain spotted fever. (Mycoplasma is also transmitted via other methods). Many people who have lyme disease never remember a tick bite, and a ring rash never appears in over half the cases. Lyme can be transmitted in-utero from mother to child.

Western Blot TESTING IS VERY INCONCLUSIVE – especially if not done at one of the recommended tick-borne disease specialty labs. A clinical evaluation by an experienced practitioner is necessary.

[JTs-Mom]

Thanks for the info. I am highly suspicious of Lyme in my son's case. He had a tick bite (2 actually) in May '08 and neuro symptoms (motor tics) began 6 months later. There have also been some other interesting 'coincidences'... reduction of tics on amoxicillan (for other reasons) and recent mycoplasma infection (a common coinfection). I'm exploring this avenue now... anxiously awaiting IgeneX results, but still planning to consult with a Lyme expert regardless of + or - .

[PacificMama]

Thanks for the info. I am highly suspicious of Lyme in my son's case. He had a tick bite (2 actually) in May '08 and neuro symptoms (motor tics) began 6 months later. There have also been some other interesting 'coincidences'... reduction of tics on amoxicillan (for other reasons) and recent mycoplasma infection (a common coinfection). I'm exploring this avenue now... anxiously awaiting IgeneX results, but still planning to consult with a Lyme expert regardless of + or - .

 

 

Hi,

See my other post in "Lyme-like" thread. I've put in some information on symptoms.

That's great that you had Igenex testing. Please keep us posted. I'm happy to help if you have more questions.

Mary

[lyme_mom]

Thanks for the info. I am highly suspicious of Lyme in my son's case. He had a tick bite (2 actually) in May '08 and neuro symptoms (motor tics) began 6 months later. There have also been some other interesting 'coincidences'... reduction of tics on amoxicillan (for other reasons) and recent mycoplasma infection (a common coinfection). I'm exploring this avenue now... anxiously awaiting IgeneX results, but still planning to consult with a Lyme expert regardless of + or - .

 

As I said in another post, I wouldn't wait for test results to get on antibiotics if your child has lyme symptoms. A lyme doctor would prescribe antibiotics while you wait for test results. It just kills me that it is not standard practice to give every child with PANDAS symptoms an Igenex lyme panel. The PANDAS doctors need to hook up with the lyme experts and makes sure they know how to spot lyme.

[sf_mom]

I think you are right... 'loaded down with multiple infections'.

 

In our situation, we know the cause, my friends son had RF, it went to my older son, to my younger son who was diagnosed with Kawasaki's and hospitalized for six days. 5 children attended a playdate in 2007, all 5 children got sick, 4 are confirmed PANDAS and the last is suspected PANDAS (has all the symptoms) and will be tested. BUT, with Kawasaki's it is still unclear if its the S. pyogenes, Staphylococcus aureus, Haemophilus influenzae or something completely different and RF being strep related. AND, I've often heard H. Influenzae loves to make love to strep.

 

It would be interesting to test my children for co-infection to see if they came up positive for some of these other bacteria's. AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

 

 

 

I just thought I would post an interesting coincidence from yesterday. I get regular postings via email from a lyme parents group (these are all people whose children are receiving treatment for lyme and/or infections such as myco, bartonella etc.). There was an initial posting from a mom asking parents if their children regularly test positive for strep (strep A in her case), as her children regularly did. Several people posted back that yes, their children also regularly tested positive for strep. Just wondering about the connection… and the possibility (that has been raised here before) that some of our kids are loaded down with multiple infections. (I do not know the details of Dr. Cunningham’s study, but would also be interested on thoughts as to how active lyme (or similar) infection would also affect CamK).

 

Since I am one of the voices here representing non-strep infections causing tics/ocd (known to some as PITAND), I wanted to post some brief information for anyone who is still sorting through the potential triggers (but has likely eliminated allergies/diet/environment/hereditary).

 

Neuropsychiatric manifestations of lyme disease have been well documented, researched and written up for many years now. These symptoms include OCD, rage, cognitive deficits, memory problems, anxiety, sleep disorders and on and on. For all of the doctors out there on the front line treating lyme and these other infections, this is all very commonplace and not at all unusual. Symptoms can resolve or improve with the correct combination of antibiotics, given for the appropriate duration.

 

For anyone out there whose child (or themselves) presented with any of these symptoms – particularly following some sort of initial illness of any kind -- please take a look at the following 2 links. Your symptoms may have had sudden onset, or appeared slowly and increasingly. There may or may not be other physical symptoms in addition to the neurological ones.

 

To see a list and links of just how much literature exists on neuropsych lyme:

http://www.lymeinfo.net/neuropsych.html

 

To see a short, 2 page brochure put out by ILADS (International Lyme and Associated Diseases Society) for psychiatrists called “Psychiatric Lyme Disease: What psychiatrists should know about lyme/tick-borne diseases”. (A quick diagnostic overview.)

http://www.ilads.org/lyme_disease/Psychiat...chure_08_08.pdf

 

***************************************************************************

Lyme is transmitted via a tick bite, and is the most common and fastest growing vector borne disease in the United States (and Europe). While there are certain endemic areas, it has been documented in 49 states. There are 20,000 newly documented cases each year per the CDC, but this number is probably closer to 200,000 new per year due to faulty reporting standards. Other tick-transmitted infections are mycoplasma, bartonella, babesia, Ehrlichiosis, and rocky mountain spotted fever. (Mycoplasma is also transmitted via other methods). Many people who have lyme disease never remember a tick bite, and a ring rash never appears in over half the cases. Lyme can be transmitted in-utero from mother to child.

Western Blot TESTING IS VERY INCONCLUSIVE – especially if not done at one of the recommended tick-borne disease specialty labs. A clinical evaluation by an experienced practitioner is necessary.

[PacificMama]

I think you are right... 'loaded down with multiple infections'.

 

 

 

That's why we need to get a lot of these docs from different fields locked in one room together!

[PacificMama]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

[Kay]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also.

 

I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19)

 

We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both.

 

I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc?

 

she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday.

 

so thanks this seems timely for us, information to we can use.

kay

[sf_mom]

The Cunningham Test could be a great tool someday but does need further funding to help resolve some of the questions still lingering in everyones mind.

 

I've had some long discussions about this, not only with Dr. K but my father-in-law is also a Dr. and has read many of the studies on PANDAS to help his grandchildren. AND, unfortunately with some diseases they know what it looks like at on-set, they know how to cure it............. but they do not know exactly what happens in between. Kawasaki's has lingered like this for over 30 years and they still don't know the exact cause. Sometimes they even stop looking/researching. I am hopeful that many, many, many children will get better as a result of the current environment or momentum behind PANDAS. BUT, I am not hopeful that researchers will collectively come to a conclusion for a very, very long time.

 

-Wendy

[Dr_Rosario_Trifiletti]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

ABSOLUTELY CORRECT!

 

anti-CaMK2 must be marking a common final pathway NEUROimmune reaction - after all these are mostly brain symptoms that we are talking about here.

 

It is very likely NOT infectious etiology specific

 

A positive Cunningham test likely means a neuroimmune etiology, need not be bacterial, need not even be infectious (for example lupus-like illnesses).

 

This is what I find it most useful for:

 

1. Distinguishing non-immunological TS and/or OCD from PANDAS-like illnesses. If this can be verified, we may be able to answer questions like "How many kids with tics and/or OCD really have PANDAS-like illness" - just sample 1000 kids with tics or OCD (all comers) and find out what percentage have positive Cunningham tests. (it can't be that easy ....).

 

2. Get a sense (along with response to steroid burst) if costly immunological interventions like IVIG and/or PEX are likely to work

 

3. Distinguish between PANDAS and SC when there is clinical confusion. I realize there are kids out there (I know of three) that have anti-CaMK2 in the SC range (200's) but do not appear to have SC. I don't routinely do echocardiograms on patients with clear-cut PANDAS any more; but I think if anti-CaMK2 >200 maybe it should be done, as it can be missed. THIS DISTINCTION IS IMPORTANT AS IT CHANGES LONG TERM MANAGEMENT.

 

4. Separate out non-immunological TS and/or OCD from "pure OCD" and "pure TS group" and focus genetic studies on large pedigree "pure OCD" and "pure TS groups". Essentially, try to filter out a major epigenetic factor which confounds linkage analysis. This may be the way to looking at underlying genetics of these disorders, which leads to proteins, which leads to disease pathways, which leads to rational treatment.

 

At the end of the day, in PANDAS patients, there is still the trigger. It is very very important to try to find the trigger(s) as early as possible and try to treat them. Immune treatments will put the disease into remission, but root cause treatments are the only way to a cure.

 

Dr. T

[lyme_mom]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also.

 

I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19)

 

We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both.

 

I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc?

 

she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday.

 

so thanks this seems timely for us, information to we can use.

kay

 

Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician.

[Kay]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also.

 

I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19)

 

We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both.

 

I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc?

 

she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday.

 

so thanks this seems timely for us, information to we can use.

kay

 

Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician.

 

 

I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info.

[lyme_mom]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also.

 

I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19)

 

We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both.

 

I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc?

 

she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday.

 

so thanks this seems timely for us, information to we can use.

kay

 

Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician.

 

 

I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info.

Great! I have talked to so many people that I cannot remember. Let me know what you think of the book. I couldn't put it down.

[sf_mom]

Dr. T

 

Another interesting study out of Italy..... Madeleine Cunningham has worked with these individuals. 58% show heart abnormalities with sign of streptococcal exposure and TIC disorder.

 

-Wendy

[Kay]

I think you are right... 'loaded down with multiple infections'.

 

...

AND, I don't think you are far off from thinking elevated CaM Kinase might be an indication of auto-immune causing neuropsychiatric symptoms as it relates to any bacteria/virus and not just strep. As Dr. Ed Kaplan likes to say 'PAND' not PANDAS and he is a strep expert.

 

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this?

 

The key is obviously getting the right type of treatment for the underlying infection(s).

 

Thanks for your thoughts.

Mary

 

Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also.

 

I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19)

 

We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both.

 

I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc?

 

she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday.

 

so thanks this seems timely for us, information to we can use.

kay

 

Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician.

 

 

I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info.

Great! I have talked to so many people that I cannot remember. Let me know what you think of the book. I couldn't put it down.

 

 

I know no problem, still reading that is why I am asking soooooooooooo many questions! thanks for turning me on to it..