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I am sick and tired of worring about this


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Okay Lyme people, tell me what you would do. My son was tested for Lyme and other tic borne illnesses by Dr. Brian Fallon. He said that he was negative on all of them. In your opinion, does this mean I can stop worrying about it? Because when you post about Lyme on the PANDAS forum, it causes me distress...and I worry. So either tell me to stop worrying about or tell me what to do.

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Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon.

 

Mary

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Okay Lyme people, tell me what you would do. My son was tested for Lyme and other tic borne illnesses by Dr. Brian Fallon. He said that he was negative on all of them. In your opinion, does this mean I can stop worrying about it? Because when you post about Lyme on the PANDAS forum, it causes me distress...and I worry. So either tell me to stop worrying about or tell me what to do.

 

 

No one is trying to cause you additional worry. I think people are just trying to bring awareness out that Lyme is a possibility. It may not be your childs issue, but for some peoples kids it is. If your son is not getting better, in my opinion, you need to explore all options. I can only speak from our own experience.

 

Look at every possibility. It's not always Lyme, but when something continues to be wrong despite the best efforts, chances are, something is being overlooked.

 

I'm not trying to scare anyone, I am just trying to share what we have learned. Our childrens health and happiness are all we are all after in the end. It's OK to be skeptical, but sometimes a second look is worth it.

Edited by NewBeginnings
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Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon.

 

Mary

 

Hi,

I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is.

Edited by faith
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Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon.

 

Mary

 

Hi,

I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is.

 

Faith, please. Nowhere in my answer did I assume PhillyPA's son had lyme. Dr. Fallon is with Columbia University, and is a renowned physician researching and treating infectious-disease based neuropsych problems. He is incredibly knowledgeable about all the various infectious diseases that can create these problems. Since PhillyPA has seen him in the past, I simply said if it were me, I'd go back with an update on my son's condition and ask for his updated opinion. Period. I don't know how long it's been, or if her son's symptoms have evolved since she last saw Dr. Fallon. This information is relevant. If he still gave the same opinion, I think she can rest assured it's not infectious disease based.

 

But speaking generally, as per the CDC, lyme is a clinical diagnosis. Because the current testing is flawed in that it does not have the sensitivity to pick up the presence of lyme bacteria in all cases, a patient must always be evaluated based on symptoms. Testing is great, and it oftentimes helps, but a "negative" lyme test doesn't mean you don't have it.

Again, see my post on the gathering of scientists and researchers from across the country who are meeting in DC this week to discuss the state of tick borne diseases. I assure you, they would all like to come up with reliable testing just as much as the rest of us.

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When my son first got sick, my first thought was Lyme. My thoughts were not on PANDAS - it was Lyme. That was in 2007. He went 2 1/2 years with no treatment (except for the IV antibiotics that Fallon gave him for 5 weeks). He gave this to him because he didn't want to wait(and neither did we) for his forth Lyme test results to come back, which were negative. He was tested for mycoplasma many times. All negative. My son just started to get treated for PANDAS with ivig this summer. He started on augmentin in February, 2010. He has shown a great deal of improvement. According to his PANDAS doctor, he has had it a long time and it will take a long time to recover. I just don't want to miss anything. I want to make sure that all my basis are covered.

 

I do keep in touch with Dr. Fallon from time to time. I do believe that he is a great doctor. I just want to hear what you Lyme mom's have to say. If you all trust Fallon, as I do, then I guess my son does not have Lyme. Right?

 

Pandas does seem to make the most sense. My younger son got Pandas and because we knew what it was he was treated right away and got better quick. My older son has had it much longer. It will take longer to get rid of. I will wait to see where he is in December. That is his next doctors appointment. I will see how much better he is doing with the PANDAS treatment.

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I wanted to mention my children did not come back positive for LD via Igenex testing nor were they positive for Mycoplasma either.... also low responsiveness to ASO - Anti-DNAse-B. However, we were very fortunate to be evaluated by one of the more respected LLMDs and will be speaking this Friday at the ILADS conference. He was not phased by my children's negative results and we proceeded with DNA testing via the urine. I too was tested at the time to see if this was CLD. Sure enough I am positive for LD. My children do not make antibodies for LD due to the fact that this is Congenital Lyme Disease. Fortunately, my older PANDAS son did come back positive when we did provocation testing and found the DNA is his urine (this particular test is proven to be very accurate)

 

Our LLMD explained very clearly this happens often (lack of antibodies) but not always with CLD. Our twins also have very low IgGs Subclasses 1 & 3 (ability to fight bacteria) and are low antibody responders in general and potentially the cause for no antibody response for ASO, Anti-DNAse-B, Mycoplasma or LD. Thankfully, our twins are responsive to treatment and we are slowly resolving their 'lupus' like symptoms. Our Dr. feels once we appropriately treat their immune system will rebound and start to make those very important antibodies.

 

Wishing you all the best as you investigate further.

 

-Wendy

Edited by SF Mom
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When my son first got sick, my first thought was Lyme. My thoughts were not on PANDAS - it was Lyme. That was in 2007. He went 2 1/2 years with no treatment (except for the IV antibiotics that Fallon gave him for 5 weeks). He gave this to him because he didn't want to wait(and neither did we) for his forth Lyme test results to come back, which were negative. He was tested for mycoplasma many times. All negative. My son just started to get treated for PANDAS with ivig this summer. He started on augmentin in February, 2010. He has shown a great deal of improvement. According to his PANDAS doctor, he has had it a long time and it will take a long time to recover. I just don't want to miss anything. I want to make sure that all my basis are covered.

 

I do keep in touch with Dr. Fallon from time to time. I do believe that he is a great doctor. I just want to hear what you Lyme mom's have to say. If you all trust Fallon, as I do, then I guess my son does not have Lyme. Right?

 

Pandas does seem to make the most sense. My younger son got Pandas and because we knew what it was he was treated right away and got better quick. My older son has had it much longer. It will take longer to get rid of. I will wait to see where he is in December. That is his next doctors appointment. I will see how much better he is doing with the PANDAS treatment.

 

Sounds like your gut is telling you that you are on a path that is providing results. If Dr. Fallon has run labs for, and evaluated for, all the possibilites concerning your son -- then perhaps you feel like you can set these possibilities aside. I do not know the particulars, but it sounds like he is telling you that none of these infections might play a role (again, I'm just assuming that they were all tested and evaluated for).

 

The great thing for all of us is, we can always re-evaluate and adjust in the future based on new research, new symptoms, new knowledge, etc. There are not too many here who have traveled a straight and narrow path in healing our children.

 

Sincerely wish your family the best.

Mary

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Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon.

 

Mary

 

Hi,

I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is.

 

This is not helpful Faith.

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When my son first got sick, my first thought was Lyme. My thoughts were not on PANDAS - it was Lyme. That was in 2007. He went 2 1/2 years with no treatment (except for the IV antibiotics that Fallon gave him for 5 weeks). He gave this to him because he didn't want to wait(and neither did we) for his forth Lyme test results to come back, which were negative. He was tested for mycoplasma many times. All negative. My son just started to get treated for PANDAS with ivig this summer. He started on augmentin in February, 2010. He has shown a great deal of improvement. According to his PANDAS doctor, he has had it a long time and it will take a long time to recover. I just don't want to miss anything. I want to make sure that all my basis are covered.

 

I do keep in touch with Dr. Fallon from time to time. I do believe that he is a great doctor. I just want to hear what you Lyme mom's have to say. If you all trust Fallon, as I do, then I guess my son does not have Lyme. Right?

 

Pandas does seem to make the most sense. My younger son got Pandas and because we knew what it was he was treated right away and got better quick. My older son has had it much longer. It will take longer to get rid of. I will wait to see where he is in December. That is his next doctors appointment. I will see how much better he is doing with the PANDAS treatment.

 

Sounds like your gut is telling you that you are on a path that is providing results. If Dr. Fallon has run labs for, and evaluated for, all the possibilites concerning your son -- then perhaps you feel like you can set these possibilities aside. I do not know the particulars, but it sounds like he is telling you that none of these infections might play a role (again, I'm just assuming that they were all tested and evaluated for).

 

The great thing for all of us is, we can always re-evaluate and adjust in the future based on new research, new symptoms, new knowledge, etc. There are not too many here who have traveled a straight and narrow path in healing our children.

 

Sincerely wish your family the best.

Mary

 

 

I agree with this. If you are seeing improvement, and Dr. Fallon did not see any improvement with the IV antibiotics, then you are probably on the right course for now. If you don't see full healing, or he relapses, then maybe you get a second opinion on the Lyme/coinfections. I know all about the worrying - I've been doing it for a year and a half. Hang in there, trust your instincts, and don't be afraid to change course if you're not getting the results you want.

 

By the way, I have a question about Dr. Fallon. I thought he was a psychiatrist and a researcher. Do I have this wrong - is he a treating LLMD? I'm on the west coast, so not as familiar with the docs on the east coast.

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Kayanne,

 

This has been discussed before but I think its important to clarify again. Children with Lyme Disease do not necessary have a negative result from steroids. Although, our son only did a 5 day steroid burst via Dr. K, we had positive results. I also know there are many children now diagnosed with Lyme/co-infections that did longer monthly tappers prior to diagnoses and also have had positive results.

 

I don't believe a child's response to steroid (positive/negative) should rule in or out anything.

 

There are plenty of testing alternatives to help determine if Lyme is present: WB via Igenex or other speciality labs that include the Lyme bands that are highly specific to LD, PCR testing or DNA testing.

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Kayanne,

 

This has been discussed before but I think its important to clarify again. Children with Lyme Disease do not necessary have a negative result from steroids. Although, our son only did a 5 day steroid burst via Dr. K, we had positive results. I also know there are many children now diagnosed with Lyme/co-infections that did longer monthly tappers prior to diagnoses and also have had positive results.

 

I don't believe a child's response to steroid (positive/negative) should rule in or out anything.

 

There are plenty of testing alternatives to help determine if Lyme is present: WB via Igenex or other speciality labs that include the Lyme bands that are highly specific to LD, PCR testing or DNA testing.

This is the first I have heard this. I thought that prednisone was bad for Lyme?

 

I was specifically talking about PhillyPA's son's case...not all lyme cases in general, and I said it "points more to PANDAS" not that it is a definite distinction between PANDAS and Lyme.

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