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I do not post often but I want to share our 9 year old daughter's story and our new information. She was dx with PANDAS in Sept 09 and has been on full dose Augmentin ever since. In Jan 10 she had T&A surgery and has been functioning at about 90% with abx. However, anytime we lower the abx dosing or try to stop, symptoms return within days. Her abx dependence has baffeled us until now....

First, I am forever grateful for the information I obtain from this forum because the more I read about Lyme and co infections here, I began to wonder what else might be going on in my child's system. Despite the 2 "negative" Western Blots (only band 41 present) from our local lab, we decided to consult with a lyme literate doctor and retest. We now know she has numerous positive bands for Lyme from IGENX and the co infection Bartonella. Our Lyme doctor has informed us that this particular co-infection, Bartonella, can mimic the PANDAS symptoms she has been experiencing.

So, she is now on daily zythromax, bactrim, and once a week Tindamax. We have stopped the Augmentin. The above treatment is to get to the co-infection, the possible cyst and intracellular bacteria. Right now, we plan to do this for at least 4 months to make sure she is treated throughout the various life cycles of the bacteria...we will reassess and decide what is next at that time. It has been 3 weeks and she has had some good and bad days but nothing terrible...thankfully. She seems to be tolerating this program pretty well. I am hopeful that if we rid her system of Lyme/Bartonella, she can really heal.

So, here I sit with such mixed emotions...thankful my daughter is doing ok today, hopeful she will heal, and angry that the guidelines for testing and treating Lyme are not clear enough to help all those that need it. Her positive band 41 on standard Western Blot bothered me from the start. And while this band alone is not significant, the ones that remained untested are. But, when the CDC has chosen only a few bands to test and these guidelines tell us it is a "negative" test for Lyme, what else were we to think? It deeply concerns me to think of how many people, like us, are suffering and don't realize that they don't have all the information because the standard testing doesn't assess it properly.

I know that every parent with a child suffering from PANDAS is burdened mentally, emotionally and financially. The medical costs between all the doctors, medicines and tests can be overwhelming. But, based on our experience, I would encouarge a full Lyme and co infection workup that goes beyond the CDC's current, inadequate standard testing...if possible with a doctor who is Lyme literate.

Thanks for letting me share and I hope we all can find the right path to have every one of our kids healed.

My best to all...

Joanne

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Thanks for posting this......it makes me want to go do this again, but igenex

 

and i'm sorry if someone answereed this....can you do this test on abx....just started a 5 day zpack last night......so i guess i can do a wait and see.....but i am so scared....of course i don't know how the z pack will go either.....

 

 

 

I do not post often but I want to share our 9 year old daughter's story and our new information. She was dx with PANDAS in Sept 09 and has been on full dose Augmentin ever since. In Jan 10 she had T&A surgery and has been functioning at about 90% with abx. However, anytime we lower the abx dosing or try to stop, symptoms return within days. Her abx dependence has baffeled us until now....

First, I am forever grateful for the information I obtain from this forum because the more I read about Lyme and co infections here, I began to wonder what else might be going on in my child's system. Despite the 2 "negative" Western Blots (only band 41 present) from our local lab, we decided to consult with a lyme literate doctor and retest. We now know she has numerous positive bands for Lyme from IGENX and the co infection Bartonella. Our Lyme doctor has informed us that this particular co-infection, Bartonella, can mimic the PANDAS symptoms she has been experiencing.

So, she is now on daily zythromax, bactrim, and once a week Tindamax. We have stopped the Augmentin. The above treatment is to get to the co-infection, the possible cyst and intracellular bacteria. Right now, we plan to do this for at least 4 months to make sure she is treated throughout the various life cycles of the bacteria...we will reassess and decide what is next at that time. It has been 3 weeks and she has had some good and bad days but nothing terrible...thankfully. She seems to be tolerating this program pretty well. I am hopeful that if we rid her system of Lyme/Bartonella, she can really heal.

So, here I sit with such mixed emotions...thankful my daughter is doing ok today, hopeful she will heal, and angry that the guidelines for testing and treating Lyme are not clear enough to help all those that need it. Her positive band 41 on standard Western Blot bothered me from the start. And while this band alone is not significant, the ones that remained untested are. But, when the CDC has chosen only a few bands to test and these guidelines tell us it is a "negative" test for Lyme, what else were we to think? It deeply concerns me to think of how many people, like us, are suffering and don't realize that they don't have all the information because the standard testing doesn't assess it properly.

I know that every parent with a child suffering from PANDAS is burdened mentally, emotionally and financially. The medical costs between all the doctors, medicines and tests can be overwhelming. But, based on our experience, I would encouarge a full Lyme and co infection workup that goes beyond the CDC's current, inadequate standard testing...if possible with a doctor who is Lyme literate.

Thanks for letting me share and I hope we all can find the right path to have every one of our kids healed.

My best to all...

Joanne

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Joanne,

I am so glad to hear your story - while I know it's no blessing to have several co-morbid diagnoses, it must be a huge relief to have answers and have the support of knowledgeable doctor(s). Give your tired family a pat on the back for sticking with it and persevering!

 

I'm half way thru Cure Unknown and am speechless - not just because I had no idea of how insidious Lyme/batonella/ehrlichia et al can be (as I type from my forested back yard in Connecticut). The politics of scientists and government bureaucrats against long term antibiotics, the egos on both sides, the bias and intensity of proving the other side was "wrong" instead of putting that energy into curing very ill people, and the witch hunts against the doctors who dared to use anecdotal patient experiences as a basis for treatment against the narrow confines of CDC sanctioned guidelines...it is terrifyingly similar and I pray with all my might that we aren't doomed to the same future.

 

After reading this book, I'd caution everyone about making sure we protect our doctors' reputations and not put them at risk by "talking out of school". They are taking a much larger risk in supporting our children than I ever realized. I also had no idea how wide spread our story is - the Lyme, Chronic Fatigue and Fibromylagia communities all share our frustrations.

 

I second your advice to parents whose kids may not respond entirely to PANDAS treatments or whose symptoms fall slightly outside "classic" lists - it's entirely possible there is more than one thing at play and we all need to keep looking at all the puzzle pieces. I love that this is a place where we can toss out ideas and bounce things off of each other - not a one size fits all forum of commiseration and uniform solutions. I hope we keep learning from each other.

 

Laura

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As I mentioned in a previous thread, our situation is very similar. My daughter showed positive on the IGENEX test for lyme and had high blood work for strep and mycoplasma. We never did the barbesia (spelling?) test, but she did show positive for it via muscle testing. My son shows positive for lyme, bartonella and mycoplasma.

 

I was petrified when lyme mom started posting because I felt that having to just think of strep was enough, but she really helped us with her information and I want to thank her for guiding us in how to test for lyme.

 

I don't think that lyme is the situation for everyone, but I would recommend anyone whose child isn't responding extremely well to antibiotics and/or IVIG to consider the IGENEX test and I would recommend anyone getting ready to do IVIG to consider testing for lyme first as well as testing the whole family for strep via the ASO blood titers before embarking on the IVIG so that when/if you do do the IVIG or PEX, you have a higher chance of complete healing.

 

Elizabeth

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Thanks for posting this......it makes me want to go do this again, but igenex

 

and i'm sorry if someone answereed this....can you do this test on abx....just started a 5 day zpack last night......so i guess i can do a wait and see.....but i am so scared....of course i don't know how the z pack will go either.....

 

 

 

I do not post often but I want to share our 9 year old daughter's story and our new information. She was dx with PANDAS in Sept 09 and has been on full dose Augmentin ever since. In Jan 10 she had T&A surgery and has been functioning at about 90% with abx. However, anytime we lower the abx dosing or try to stop, symptoms return within days. Her abx dependence has baffeled us until now....

First, I am forever grateful for the information I obtain from this forum because the more I read about Lyme and co infections here, I began to wonder what else might be going on in my child's system. Despite the 2 "negative" Western Blots (only band 41 present) from our local lab, we decided to consult with a lyme literate doctor and retest. We now know she has numerous positive bands for Lyme from IGENX and the co infection Bartonella. Our Lyme doctor has informed us that this particular co-infection, Bartonella, can mimic the PANDAS symptoms she has been experiencing.

So, she is now on daily zythromax, bactrim, and once a week Tindamax. We have stopped the Augmentin. The above treatment is to get to the co-infection, the possible cyst and intracellular bacteria. Right now, we plan to do this for at least 4 months to make sure she is treated throughout the various life cycles of the bacteria...we will reassess and decide what is next at that time. It has been 3 weeks and she has had some good and bad days but nothing terrible...thankfully. She seems to be tolerating this program pretty well. I am hopeful that if we rid her system of Lyme/Bartonella, she can really heal.

So, here I sit with such mixed emotions...thankful my daughter is doing ok today, hopeful she will heal, and angry that the guidelines for testing and treating Lyme are not clear enough to help all those that need it. Her positive band 41 on standard Western Blot bothered me from the start. And while this band alone is not significant, the ones that remained untested are. But, when the CDC has chosen only a few bands to test and these guidelines tell us it is a "negative" test for Lyme, what else were we to think? It deeply concerns me to think of how many people, like us, are suffering and don't realize that they don't have all the information because the standard testing doesn't assess it properly.

I know that every parent with a child suffering from PANDAS is burdened mentally, emotionally and financially. The medical costs between all the doctors, medicines and tests can be overwhelming. But, based on our experience, I would encouarge a full Lyme and co infection workup that goes beyond the CDC's current, inadequate standard testing...if possible with a doctor who is Lyme literate.

Thanks for letting me share and I hope we all can find the right path to have every one of our kids healed.

My best to all...

Joanne

Yes you can do the lyme testing while on antibiotics. I believe that if a child has been on antibiotics a long time it can affect the test by stopping the body from producing anti-bodies to lyme.

 

As Elizabeth mentions in this thread, you can also test for lyme and other infections through kinesiology or muscle testing. If you have not seen this done before it is really strange but it works. It is based on the same principles of a lie detector test where the body produces measurable reactions when exposed to certain things that are a problem for the person. This can be done by pressing on a person's arm while they try and hold it straight or by using a machine that measures the body's response via the palm of the hand. I would definitely do all the blood work you can including the igenex testing but this might shed additional light on what is going on with your child. My kids and I were muscle-tested for lyme/bartonella/babesia several times during our lyme treatment and the results pretty much mirrored what our LLMD thought was going on, ie. one person had just lyme, another had lyme/babesia/bartonella, etc. Any intuition can be helpful when you are trying to get a child well and you are not sure what is going on. The practitioner can also test to see if the combination of medications a person is taking agree with him or her. With my son we learned that the antibiotics were helping him but the combination of antibiotics and the homeopathic remedy samento were not good for him; so we stopped the samento. Some meds stress a person and they can fix this if a particular medication is stressing a person. They use principles of acupuncture to calm the body's response to the particular item.

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I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

 

When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

 

I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

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I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

 

When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

 

I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

 

 

Would anyone know or comment on wether the Lyme connection comes with all the comorbid issues, or is it just tics? Is tics the only symptom, or is it more likely that there would be other things going on as well?

 

Like when my pediatrician saw the blood work up that our DAN doc orderd for my son (really at my request or suggestion) and the lyme, erlechia, babesia, .... he was really puzzled and felt that it was really strange to order all that, and that my son would be 'really sick' if he had any of that stuff..... :) I guess he felt there would be so many other signs of having something than just tics?

(all the tests re lyme were negative, btw)....

Edited by faith
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Would anyone know or comment on wether the Lyme connection comes with all the comorbid issues, or is it just tics? Is tics the only symptom, or is it more likely that there would be other things going on as well?

 

Like when my pediatrician saw the blood work up that our DAN doc orderd for my son (really at my request or suggestion) and the lyme, erlechia, babesia, .... he was really puzzled and felt that it was really strange to order all that, and that my son would be 'really sick' if he had any of that stuff..... :) I guess he felt there would be so many other signs of having something than just tics?

(all the tests re lyme were negative, btw)....

 

 

i am certainly not so knowledgable on lyme -- we just went to a new dr who is an anethesiologist by day and an aricular medicine dr by night. he believes my son to have lyme, no coinfections and toxoplasma gondii infection, as well as few other lower level issues. last june, he had a completely negative western blot.

 

i believe the lyme experts believe the lyme bacteria is so insidious it takes over and makes it difficult to fight other infections, such as strep. there's some lyme/parasite connection but i don't understand it - perhaps the ticks have the parasites as well as the bacteria?

 

as we've discussed previously, my son does not have overt tics - now that i know more about tics, he has had some very slight finger movements only on an occasional basis that could be tics.

 

the 'really sick' part -- had it not been for an astute behavior therapist, we would have spent the past 18 months at various behaviorists, psychologists, psyciatrists - probably suggesting ssri - because they started to in the beginning - all working from a standpoint of behaviorally treating. he did have easily tired (although not excessive), dark circles, was low weight, slipping into 5-10 %ile (although he's small - small wrists, etc). i believe this to be part of being sick but the drs all just shrugged off these symptoms.

 

this new dr began testing him and said "his brain is showing stress -- very stressed -- very,very stressed". so i think "really sick" is up for very much interpretation.

 

when you did muscle testing for your son, did you have him tested for lyme and the coinfections? i know you think that wasn't so helpful. i'm curious what he was tested for.

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what test did you have done ?

how much was it?

HOw long did your son tic before you found infections?

how old is your son?

how long have you been treating him?

how much progress have you seen to this point?

I'm sorry ....did you have any co infections??

 

thanks

 

I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

 

When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

 

I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

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I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

 

When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

 

I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

 

 

Would anyone know or comment on wether the Lyme connection comes with all the comorbid issues, or is it just tics? Is tics the only symptom, or is it more likely that there would be other things going on as well?

 

Like when my pediatrician saw the blood work up that our DAN doc orderd for my son (really at my request or suggestion) and the lyme, erlechia, babesia, .... he was really puzzled and felt that it was really strange to order all that, and that my son would be 'really sick' if he had any of that stuff..... :) I guess he felt there would be so many other signs of having something than just tics?

(all the tests re lyme were negative, btw)....

 

Lyme or other tick-borne illnesses like Bartonella or Babesia can cause someone to have symptoms that look like PANDAS.

 

The symptoms of Lyme (also called Borellia) and the coinfections of Bartonella and Babesia can also be quite subtle, especially in the beginning. You really need to be alert to these symptoms to pick up on them.

 

As for being "really sick", you don't want to wait until it is obvious that the child is ill b/c this means the infection would be quite far along and harder to treat.

 

When my oldest was diagnosed with lyme we tested the whole family with igenex. I just wanted to know what we were dealing with. To my surprise and horror my other two kids tested positive. They would not have tested positive on the standard western blot because the standard test does not test for bands 31 and 34, two of the most important markers for lyme which they antibodies for. Once we knew my other two kids were positive we watched them and when their symptoms started we treated them. If it had not been for our oldest son's case of lyme we probably would not have picked up on our other two kids' lyme disease because they didn't have a lot of symptoms. I think we nipped it in the bud fortunately.

 

All the tests are unreliable but some are better than others. If I were wondering whether to spend the money on a particular test like the Igenex Western blots (which cost 200) OR a visit to an ilads doctor, I would choose the latter. Lyme/Babesia/Bartonella are diagnosed based on symptoms, not test results. I cannot emphasize this enough.

 

The reason it is important to consider tick-borne illnesses is b/c lyme is the fastest growing infectious disease, ten times more common than AIDs. It should be the first infection to consider when a child has a mystery illness, not the last.

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Lyme Mom

you may have said this already,,,but is it true...

if you have lymes..and lets say you don't know it.....that taking augmentin can cause joint/muscle pain and hive....

i am hoping that was my sons case...we did western via quest....neg>>>

i want to get an igenex.....other than that, the aug was like a miracle...

Thanks

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Lyme Mom

you may have said this already,,,but is it true...

if you have lymes..and lets say you don't know it.....that taking augmentin can cause joint/muscle pain and hive....

i am hoping that was my sons case...we did western via quest....neg>>>

i want to get an igenex.....other than that, the aug was like a miracle...

Thanks

 

Yes. If you have lyme and experience increased or new symptoms on antibiotics it can be a die off reaction or herx, including joint/,muscle pain and rashes. I think augmentin is effective against some co-infections but I can't remember which ones.

Igenex is the best lyme test. The basic igg and igm western blot (188 and 189) cost 200. A more complete panel of tests for lyme is available for 400 but I would start with the Western blot by Igenex. I don't think the Quest Western blot is considered very good. Labcorp's Western blot is better I believe. That's always an option-running the Labcorp test first and then resorting to the Igenex test. Some people get a positive result on the Labcorp test and do not need to do the Igenex test.

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Do you know of any significance with testing positive for band 41 and negative on everything else? I just got my son's western blot results from LabCorp. I already returned the Cure Unknown book so I can't look up my question which I think she talks about?

Edited by justinekno
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Do you know of any significance with testing positive for band 41 and negative on everything else? I just got my son's western blot results from LabCorp. I already returned the Cure Unknown book so I can't look up my question which I think she talks about?

 

Was it igm or igg? You usually have band 41 if you have lyme disease but it is not in and of itself proof of lyme disease. If you could do the igenex test you could find out if your son has antibodies to bands 31 and 34 also. The Labcorp Western blot does not test for these important antibodies to Lyme Disease so it is like having half a lyme test. If your son has symptoms I would definitely get the igenex lyme test (test #s 188 and 189) and/or have an evaluation by an ilads doctor. Until they develop a better test, lyme will remain a a clinical diagnosis. Even the CDC says lyme is a clinical diagnosis and their two tiered testing is designed for reporting cases of lyme, not diagnosing it.

PacificMama posted a very interesting explanation of band 41 in a discussion with Dr. T about his observation that 80% of his patients with PANDAS are positive for band 41. http://www.latitudes.org/forums/index.php?...art=#entry56240.

Lyme Mom

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